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The END: Pediatric Death and Dying Kevin M. Creamer M.D. Pediatric Critical Care Walter Reed AMC The Kobeyashi Maru? How we deal with death is at least as important as how we deal with life Agenda Death statistics EOL training In practice, from Resident’s and families’ perspectives

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the end pediatric death and dying

The END: Pediatric Death and Dying

Kevin M. Creamer M.D.

Pediatric Critical Care

Walter Reed AMC

the kobeyashi maru
The Kobeyashi Maru?

How we deal with death is at least as important as how we deal with life

  • Death statistics
  • EOL training
      • In practice, from Resident’s and families’ perspectives
  • Modes of death
      • CPR issues and outcomes
      • Family presence / support
      • DNR/ Withholding / Withdrawing support Spectrum
      • Brain Death
      • Organ Donation
  • The tough stuff
national pediatric data
National Pediatric Data
  • Roughly 80,000 pediatric deaths occur annually in US and Canada
    •  2/3 infants, and 2/3 of these deaths occur in the 1st month
  •  35,000 Pediatricians
    • Limits exposure to <3 / year

Sahler, 2000, Pediatrics

pediatric resident s attitudes
Pediatric Resident’s Attitudes
  • Over 200 residents surveyed
    • Majority expressed discomfort toward issues of death and dying upon entering training that only somewhat improved over time
  • Developed unplanned behaviors to create a safe emotional distance
  • Parents perceived this distancing
    • Desired physicians to communicate openly, share grief, and provide comfort and support

Vazirani, CCM, 2000,Schowalter, J Ped, 1970, Harper, J Reprod Med, 1994

narmc pediatric residents
NARMC Pediatric Residents
  • Surveyed 29 housestaff
    • 12 reported no EOL training thus far
    • 5 have discussed EOL issues in Continuity clinic
    • 1 answered correctly regarding distinction between withdrawal and limitation of support







end of life training almost non existent
End of Life training: Almost Non-existent
  • 1/3 of 115 medical residents never supervised during DNR discussion
  • 76% All surgery residencies nationwide had one or no ethics lecture in entire curriculum
  • ½ of 300 nurses reported lack of understanding of advanced directives

Tulsky, Arch Int Med, 1996, Downing, Am J Surg, 1997, Crego, Am J Crit Care,1998

more work to be done
More work to be done…
  • French PICU excluded 93.8% parents and 53.7% bedside nurses from EOL planning
    • Parents informed of result in 18.7% of cases
  • VA study >80% physicians unilaterally withheld or withdrew support (without knowledge or consent of patient/family)
  • US survey found 92% of physicians but only 59% of nurses felt ethical issues were well discussed with the families
    • 18% nurses reported that physicians were not at bedside at the time of withdrawal

DeVictor, CCM,2001, Burns, CCM, 2001Asch, Am J Resp CCM, 1995

looking back at death
Looking Back at Death
  • Family telephone interviews after 150 deaths revealed
    • 19% wanted more information
    • 30% complained about poor communication
    • Many had persistent sleep, work, emotional issues
  • 1to2-Year Follow-up found
    • 46% report perceived conflict between family and medical staff
    • Need for better space for family discussions reported by 27%

Cuthbertson, CCM, 2000, Abbott, CCM, 2001

mode of death in picu
Mode of death in PICU

NICU study: Withdrawal 65%, Limit 8%, Full Tx 26%,

Peds H/O review: DNR 64%, Full Tx 10%, died at home 40%

Duncan,CCM(A), 2001, Wall, Pediatrics,1997, Klopfenstein, J Peds H O, 2001

death in the picu
Death in the PICU
  • Limitation of care thought appropriate in 12.5% PICU cases
    • 52.4% of all deaths and 100% of all non-cardiac surgical deaths were preceded by limitation of support
  • Reasoning included
    • Burden vs benefit 88%, Qualitative futility 83%, Preadmission Quality of life 50%
  • Nurses significantly more likely to desire limitation of care ( ex. Mech Vent, inotropes)

Keenan, CCM, 2000

cpr outcomes

80 Pediatric Cardiac Arrests

6 survived to discharge

all had neurologic sequela


154 codes Children’s Hosp. of Wisconsin


Ward 77%

PICU 25%

CPR Outcomes

Innes, 1993, Arch Dis Child, Sichting 1997, CCM (A),

Chan 2001, CCM (A) Schindler, 1996 NEJM

more cpr outcomes
More CPR Outcomes
  • Schindler, 1996 NEJM
    • No survivors after more than two doses of epinephrine or resuscitation for longer than 20
  • PA Innes, 1993, Arch Dis Child
    • “no survivors from resuscitation attempts longer than 30 minutes’
  • A. Slonim and Pollack 1997 CCM (A)
    • Overall survival to discharge13.7%
    • <15 minutes 18.6%
    • 15-30 minutes 12.2%
    • > 30 minutes 5.6%
  • “From the very beginning, it was not the intention of experts that CPR was to evolve as a routine at the time of death so as to include case of irreversible illness for which death was expected”
  • There is no obligation to allow or perform futile CPR
    • Even if the family demands it

Weil, CCM, 2000, Luce, CCM 1995

family presence during code
Family Presence During Code
  • Pro
    • Families desire to be present
    • Helps with grieving
  • Con
    • Psychological trauma to witnesses
    • Performance anxiety
    • Fear of litigation
family presence data
Boie, Ann Emerg Med, 1999

80.7% of 407 families surveyed said yes

Meyers, J Emerg Nurs, 1998

96% of 25 families who lost a family member said yes

Hanson, J Emerg Nurs, 1992

> 200 families surveyed

>70% wanted to be there and staff agreed

CPR committee reviewed performance

no decrement with family present

Ped Emerg Care, 1996

allowed families in during procedure

>90% of families and staff said they’d do it again

Jarvis, Intens Crit Care Nurs, 1998

89% of 60 PICU staff said yes

Informal survey of 45 Pediatric Intensivist

SCCM Feb 2000

41/45 said yes to family presence

Family Presence Data

“They were there at the beginning of the life they should have the opportunity to be there at the end”

O’Brien, Peds Emerg Care, 2002?

family presence during code18
Family Presence During Code
  • Physicians and Nurses at the scene make the call
  • Not for everyone
    • Belligerent/intoxicated family members
    • Cramped environment
  • Need a knowledgeable liaison with family
  • AHA PALS 2000 highly encourages Family presence
brain death
Brain Death
  • Irreversible cessation of all functions of the entire brain, including the brainstem
  • Takes two attending physicians, at least one should be a neurologist or neurosurgeon
  • Takes two clinical exams separated by:
    • 48 hours (7days to 2 months)
    • 24 hours (2months to 1 year)
    • 12 hours ( > 1 year of age)
    • ?? (less than 7 days old)

Lutz-Dettinger, Peds Clin NA, 2001

brain death prerequisites
Brain Death Prerequisites
  • Known cause of coma, sufficient to explain the irreversible cessation of all brain function
  • Reversible causes of coma must be excluded:
    • Sedatives and neuromuscular blocking drugs
    • Hypothermia
    • Metabolic and endocrine disturbances:
      • Severe electrolyte disturbances
      • Severe hypo- or hyperglycemia
    • Uncontrolled hypotension
    • Surgically remediable intracranial conditions
    • Any other sign that suggests a potentially reversible cause of coma
clinical evaluation
Clinical Evaluation
  • Absence of higher brain function
    • Comatose, unresponsive, no convulsions
  • Absence of brainstem function
    • Unreactive Pupils, Absent vestibulo-ocular, oculocephalic and corneal reflexes, no gag or cough,no change of heart rate with IV atropine or oculocardiac reflex
  • No respiratory control or respiratory movement (Apnea test)
confirmatory tests
"Confirmatory" tests
  • Flat EEG for at least 30 min
  • Confirmation of absence of blood flow
    • Four-vessel contrast angiography or radionuclide imaging
    • Transcranial Doppler
limiting support
Limiting support
  • Baby Doe legacy
    • Mandates provision life-sustaining medical treatment (LSMT) to prevent undue discrimination against disabled infants
    • Led to possible overuse of LSMT
    • Exceptions
      • Permanent unconsciousness
      • “Futile” and “virtually futile” treatment
        • That imposes excessive burdens on infant

AAP Bioethics Committee, Peds, 1996

life sustaining medical treatment
Life Sustaining Medical Treatment
  • Transplants
  • ECMO
  • Dialysis
  • Mechanical Ventilation
  • Antibiotics
  • Nutrition
  • Hydration






limiting support26
Limiting Support
  • It is justifiable to (Forego = withhold or withdraw) life-sustaining treatment when the burdens outweigh the benefits and continue treatment is not in the best interests of the child
    • Ethically, morally, and legally the same
    • Even food and water (Cruzon case)
  • DNR > withholding/limiting > Withdrawing support spectrum

Burns, CCM, 2001, AAP Guidelines, Pediatrics, 1994

variable decision making
Variable Decision-Making
  • 270 Pediatric oncologists and intensivists
    • Probability of survival, Parents wishes
    • In 3 of 8 scenarios >20% chose completely opposing treatments
  • 86 ICU staff
    • Family preferences, probability of survival, functional status
    • 80% of questions had 20-50% variability in response

Randolph, Pediatrics,1999, Randolph, CCM, 1997

the tough stuff
The Tough Stuff
  • Ethical principles, Futility, and decision making
  • Models of care continuum
    • Palliative care
  • Family conference
    • communication tips
  • Organ donation
  • A word about PAIN
  • Follow-up
    • Bereavement of family and staff
ethical working principles
Non Malfeasance

First do no harm


Best interest of the child


Don’t shield children from the truth

Prevents them from dealing with the issues at hand


Cognitively and developmentally appropriate communication

Sharing information helps avoid feelings of isolation

Self determination and best interests should be central to decision making

Minimization of physical and emotional pain

Developing partnerships with families

Challenges faced by providers of EOL care deserve to be addressed

Ethical / Working principles

Todres, New horizons, 1998, Sahler, Peds 2000

  • Physiologic futility – straightforward
    • Lasix won’t work in anuric renal failure
    • Dopamine won’t raise blood pressure if Epi has failed to do so
    • Antibiotics for viral URI
  • Medical futility – fuzzier
    • Mechanical ventilation won’t make a difference in HIV pt with ARDS
  • Other futility paradigms
    • If hasn’t worked in the last 100 tries
    • If it just prolonging unconscious life
moral decision making
Moral Decision Making
  • Utilitarian
    • Burden vs benefit
      • Most benefit for the most people involved
  • Deontologic
    • Duty, or higher calling
    • “Preserve life” regardless of the cost
  • Casuistry
    • Based on paradigm cases
    • Ex. American legal system
limits of physician obligation
Limits of Physician Obligation
  • Treatment not likely to confer benefit
    • Antibiotics for URI
  • Treatment causes more harm than good
    • High does Barbiturates for insomnia
  • Treatment conflicts with distributive justice
    • CT scan for tension HA

Luce, CCM, 1995

decision conflicts
Decision conflicts

* “Parents not allowed to make martyrs out of their children”

all or none model
All or None Model




toward Cure


treatment of


emotional, and

spiritual needs







Frager, 1996, J of Palliat Care

the double effect
The Double effect
  • Glucksberg vs Vacco (Supreme Court)
    • Euthanasia is a NO GO!
    • Palliative care is OK
      • Giving a large dose of sedative/narcotic to relieve pain and suffering is permissible even if it risks a bad effect of apnea or hypotension
    • Nature of intent is the key
    • Document, document,document

Luce, CCM,2001(S)

palliative care
Palliative Care
  • “The active total care of patients whose disease is not responsive to curative treatment”
    • Pain, dyspnea, and loneliness
  • “Goal is to add life to the child’s years not years to the child’s life”
  • The medical plan should not be all or none

Chaffee, Prim Care Clin, 2001, AAP consensus, Pediatrics, 2000

continuum model
Continuum model

Treatment directed

Toward Cure








treatment of physical,

emotional, and spiritual needs

Frager, 1996, J of Palliat Care

palliative care consideration
Palliative Care Consideration
  • Cancer when treatment may fail
  • Diseases which may cause premature death ( ex. CF, HIV)
  • Progressive disease without cure (DMD, SMA II )
  • Neurologic or congenital disease where complication can cause death (ex CP/ MR with recurrent aspirations)
barriers to palliative care
Denial - Inability to admit cure not an option

Cure vs comfort - Choice leads to parental guilt

Uncertainty - Rarity makes reliable prognostic information scarce

Loss of Security - Fear therapeutic alliance damaged

Inexperience - Parent and provider with situation

Personal distress -Inability to cope

Barriers to Palliative Care

Chaffee, Prim Care Clin, 2001

timing is everything
Timing is everything

Hello, I’m Dr Creamer, Little Johnny is going to die, what nobody told you?

  • Frequently patients with chronic progressive disease present to the PICU with NO advance directives
  • Detailed discussions of resuscitation parameters need to occur when the patients are at baseline
    • That means in the continuity clinic setting
advanced directives
Advanced Directives
  • An expression of patient or parents preferences re: medical care
  • May request of reject care
    • Under defined conditions
  • May be written or as part of medical power of attorney
  • Best done by team that knows the patient and family the best
palliative care consults
Palliative Care Consults

@ Transfusions, central lines, intubation, feeding tubes labs, x-ray

Pierucci, Pediatrics, 2001

family conference
Family Conference
  • Whenever important information requiring decisions needs to be imparted
    • Especially true with end-of life decisions
  • Area or space away from the bedside
    • Minimal interruptions
  • Plans specifics: 5 W’s ahead of time
  • Review with team current status of disease, prognosis, treatment options, feelings and biases, and family’s understandings

Curtis, CCM(s), 2001

  • “I’m sorry” doesn’t cut it
    • Sympathy vs. Pity
    • Short-circuits potential deeper discussion
    • Confused with an apology
    • Changes focus from patient and family to physician
  • “I wish things were different”
    • Requires further exploration of reactions and feelings
  • “Tell me the most difficult part”

Quill, Annals Int Med, 2001

family conference46
Family Conference
  • Introduce everyone, and set the tone
  • Review what has occurred
    • Find out what is the family’s understanding
  • Acknowledge uncertainties and strong emotions
    • Encourage exploration of emotions
  • Tolerate silence
the decision
The Decision
  • Make a recommendation about treatment
  • Redirect hope toward comfortable death
    • Doing things for… vs. doing things to ____
  • Clarify withdrawal of treatment not care
    • Specify what will and won’t be done
    • Describe what the patients death might be like
  • Use repetition to show you understand family’s wishes
  • Support the family’s decision
the wrap up
The Wrap Up
  • Summarize the new plan
  • Ask for questions
  • Ensure family knows how to reach you
  • Give family time alone after you have left
  • Encourage family’s presence and participation
    • Pictures, footprints, last bath, etc.
what about pain
What about Pain?

“The duty to do everything possible to free children from intractable pain or distress is a moral imperative”

  • Barriers to adequate pain control
    • May not be recognized
    • Concern about side effects or Addiction
    • Inadequate knowledge
    • Multifactorial in origin

Kenny, J Pall Care, 1996, Chaffee, J Pall Care, 2001

pain curriculum
Pain Curriculum
  • Assessment >> monitoring relief
  • Dependence vs addiction
  • Prevent / treat opioid side effects
  • Scheduled and supplementary dosing
  • Titration to effect
  • Use of other specialties and modalities
  • Communication

Sahler, Pediatrics, 2000

organ donation
Organ Donation
  • Can save or improve the lives of as many as 25 people
  • Is supported by the world’s major religions
  • Does not affect funeral arrangements
  • Does not cost anything
  • Affects families positively
  • Call to organ donor center is REQUIRED!
non heartbeating organ donation
Non-Heartbeating Organ Donation
  • Pediatric candidates may have severe neurologic insults but not meet brain death criteria
    • Decision to withdraw support made independently of donation
    • Requires informed consent
    • Certified as dead ( apnea+asystole for 2 minutes)

Position Paper,Ethics Committee ACCM, CCM, 2001

the end
  • Be there for the actual death
  • Don’t ask the nurses to do something you wouldn’t do yourself
  • Acknowledge your own feelings and those of your colleagues
    • They may be completely different
  • Assist the family with the transition
    • Paperwork , telephone calls, autopsy, funeral arrangements
staff debrief
Staff Debrief
  • “You don’t have time to be sad, you have progress notes to write”
  • All deaths
    • For exploration of feelings and personal impact
      • “I should have done X”
      • “I thought I was the only one feeling Y”
  • For Codes:
    • Immediately for acute issues (process, logistics, performance) additionally
staff debrief55
Staff Debrief
  • Staff unavailable for actual death get “closure”
  • Acknowledge feelings
    • Use of appropriate and inappropriate self protective mechanisms
  • Team Building
    • Reconcile differences between disciplines
staff debrief56
Staff debrief
  • Normal people who have survived an abnormal situation.
    • It is not therapy or counseling
    • It is basic and wise preventive maintenance for the human spirit
  • Guidelines
    • No Rank during session
    • Confidentiality
    • You don’t have to speak
debrief phases
Fact phase

Ask participants to describe the event from their own perspective.What was their role in this event?

Thought phase

What was your first thought at the scene (or when you heard about it)?When you came off autopilot what do you recall thinking?

Reaction phase

What was the worst thing about the event?What do you recall feeling?

Symptom phase

Describe probable cognitive, physical, and emotional behavioral responses —   > at the scene   > a few days afterward

Teaching phase

Relay information regarding stress reactions and what can be done about them

Wrapup phase

Reaffirm positive things


Be available & accessible.

Debrief Phases
parental bereavement
Parental Bereavement
  • Survey of the parents of 57 children after death
    • Perception of staff’s uncaring emotional attitude worsened short and long term grief
    • Perception of caring and adequate information communication decreased long term grief

Meert, PCCM, 2001

what you can do
What you can do…
  • Handwritten note of sympathy
  • Funeral attendance
  • After autopsy results available, then 6,12 and 24 months
    • How are thing going for you since your child died?
    • Have you been able to resume your normal routines?
    • How is your family coping?
    • How has your child’s death affected your relationship with your spouse?
    • How are your other children reacting?
    • How are you sleeping and eating?, …returned to work?
    • Are you able to concentrate?
    • Can I do anything to help?

Todres, CCM, 2001