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Death Death Presentation Transcript

  • 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
    • 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
    • Roughly 80,000 pediatric deaths occur annually in US and Canada
      •  2/3 infants, and 2/3 of these deaths occur in the 1 st month
    •  35,000 Pediatricians
      • Limits exposure to <3 / year
    Sahler, 2000, Pediatrics
  • 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
    • 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
    POOR 1 Disagree SUPERIOR 5 Agree
  • 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…
    • 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
    • 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 Duncan, CCM(A), 2001, Wall, Pediatrics,1997, Klopfenstein, J Peds H O, 2001 NICU study: Withdrawal 65%, Limit 8%, Full Tx 26%, Peds H/O review: DNR 64%, Full Tx 10%, died at home 40%
  • 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
    • Pre-hospital:
      • 80 Pediatric Cardiac Arrests
        • 6 survived to discharge
        • all had neurologic sequela
    • In-hospital:
      • 154 codes Children’s Hosp. of Wisconsin
      • Survival
        • Ward 77%
        • PICU 25%
    Innes, 1993, Arch Dis Child, Sichting 1997, CCM (A), Chan 2001, CCM (A) Schindler, 1996 NEJM SURVIVAL 11% 91% 36% 82% 37% 71% Cardiac Respiratory
  • 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%
  • CPR
    • “ 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
    • 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
  • “ 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? 40% All Others 26% Outpatient specialties 63%* 57.5%* Inpatient Specialties Residents Physician Subgroups 40% Would you do it again? 50% 21% 34.7%* 24% Overall Parents Family members Would you allow ________ to be present during a code? 245 (90.9) 582 (87.1) Number of respondents (% physicians) USPS 2000 Pediatrician Survey Chest 2000 Internist Study
  • 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
    • 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
    • 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
    • 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)
  • &quot; Confirmatory &quot; tests
    • Flat EEG for at least 30 min
    • Confirmation of absence of blood flow
      • Four-vessel contrast angiography or radionuclide imaging
      • Transcranial Doppler
  • Brain Scan: no flow
  • 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
    • Transplants
    • ECMO
    • Dialysis
    • Mechanical Ventilation
    • Antibiotics
    • Nutrition
    • Hydration
    G A M U T
  • 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
    • 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
    • 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
    • Beneficence
      • Best interest of the child
    • Veracity
      • Don’t shield children from the truth
        • Prevents them from dealing with the issues at hand
    • Autonomy
    • 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
    Todres, New horizons, 1998, Sahler, Peds 2000
  • Futility
    • 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
  • Futility
    • 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
    • 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
    • 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 * “Parents not allowed to make martyrs out of their children” Palliative care Don’t Treat Forego treatment Ethics? Transfer ? Trial of Treatment Treat No Benefit Palliative care Don’t Treat (Quinlan case) Forego treatment Ethics consult? Trial of Treatment Treat Ambiguous Benefit Legal? Ethics? Treat* Forego treatment Reassess Treat Treat Clear benefit What next? What to do? Parents Physician Led team
  • All or None Model Treatment primarily directed toward Cure Supportive treatment of physical, emotional, and spiritual needs D E A T H Bereavement Frager, 1996, J of Palliat Care
  • 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
    • “ 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 Treatment directed Toward Cure Supportive treatment of physical, emotional, and spiritual needs D E A T H Bereavement Frager, 1996, J of Palliat Care
  • 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
    Chaffee, Prim Care Clin, 2001
  • Timing is everything
    • 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
    Hello, I’m Dr Creamer, Little Johnny is going to die, what nobody told you?
  • 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 @ Transfusions, central lines, intubation, feeding tubes labs, x-ray Pierucci, Pediatrics, 2001 30% 49% 80%* Social services consulted 23% 34% 64%* Chaplain consulted 66% 70% 92%* Emotional needs noted 4% 4% 28%* Withheld mechanical ventilation 12% 13% 56%* Withheld vasopressors 29% 24% 8%* CPR attempts 63.2% 64% 44.8%* Medical intervention in the last 48 hours of life @ No Consult No Consult (Matched) n=123 Consult n=25 Category of impact
  • 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
  • Communication
    • “ 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 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
    • 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
    • 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?
    • “ 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
    • 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
    • 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
    • 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
    • “ 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 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 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
      • Summarize
      • Be available & accessible.
  • 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…
    • 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
  • To our patients ….