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Transcript of Death
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 statisticsEOL 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 1st 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 distanceParents 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 housestaff12 reported no EOL training thus far5 have discussed EOL issues in
Continuity clinic1 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 discussion76% All surgery residencies nationwide had one or no ethics lecture in entire curriculum½ 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
31%
26%
23%
20%
Failedresuscitation
Withdrawal ofCare
Limitation ofCare
Brain Death
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 OutcomesPre-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
Respiratory Cardiac
71% 37%
82% 36%
91% 11%
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 presentHelps with grieving
ConPsychological trauma to witnessesPerformance anxietyFear 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
Chest 2000
Internist Study
USPS 2000
Pediatrician Survey
Number of respondents
(% physicians)
582 (87.1) 245 (90.9)
Would you allow ________ to be present during a code?
Family members Parents
Overall 24% 34.7%*
Subgroups Physician All Others Outpatient specialties
Inpatient Specialties
Residents
21% 40% 26% 57.5%* 50%
Would you do it again?
40% 63%*
“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 Code
Physicians and Nurses at the scene make the callNot for everyone Belligerent/intoxicated family members Cramped environment
Need a knowledgeable liaison with familyAHA PALS 2000 highly encourages Family presence
Brain Death
Irreversible cessation of all functions of the entire brain, including the brainstemTakes two attending physicians, at least one should be a neurologist or neurosurgeonTakes 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 PrerequisitesKnown cause of coma, sufficient to explain the irreversible cessation of all brain functionReversible 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)
"Confirmatory" tests
Flat EEG for at least 30 minConfirmation of absence of blood flowFour-vessel contrast angiography or
radionuclide imagingTranscranial Doppler
Brain Scan: no flow
Limiting support
Baby Doe legacyMandates provision life-sustaining
medical treatment (LSMT) to prevent undue discrimination against disabled infants
Led to possible overuse of LSMTExceptions
Permanent unconsciousness“Futile” and “virtually futile” treatment
That imposes excessive burdens on infant
AAP Bioethics Committee, Peds, 1996
Life Sustaining Medical Treatment
TransplantsECMODialysisMechanical VentilationAntibioticsNutrition Hydration
GAMUT
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 childEthically, morally, and legally the sameEven 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 StuffEthical principles, Futility, and decision makingModels of care continuum Palliative care
Family conference communication tips
Organ donationA word about PAINFollow-up Bereavement of family and staff
Ethical / Working principles
Non Malfeasance First do no harm
Beneficence Best interest of the
childVeracity Don’t shield children
from the truth Prevents them
from dealing with the issues at hand
Autonomy
Cognitively and developmentally appropriate communicationSharing information helps avoid feelings of isolationSelf determination and best interests should be central to decision making Minimization of physical and emotional painDeveloping partnerships with families Challenges faced by providers of EOL care deserve to be addressed
Todres, New horizons, 1998, Sahler, Peds 2000
Futility
Physiologic futility – straightforwardLasix won’t work in anuric renal failureDopamine won’t raise blood pressure if
Epi has failed to do soAntibiotics for viral URI
Futility
Medical futility – fuzzierMechanical 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 conflictsPhysician Led team
Parents What to do? What next?
Clear benefit Treat Treat Reassess
Forego treatment
Treat* Legal?
Ethics?
Ambiguous Benefit
Treat Trial of
Treatment
Ethics consult?
Forego treatment
Don’t Treat
(Quinlan case)
Palliative care
No Benefit Treat Trial of
Treatment
Ethics?
Transfer ?
Forego treatment
Don’t Treat Palliative care
* “Parents not allowed to make martyrs out of their children”
All or None Model
Treatmentprimarilydirected toward Cure
Supportive treatment of
physical, emotional, and spiritual needs
DEATH
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 keyDocument, 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
DEATH
Bereavement
Frager, 1996, J of Palliat Care
Palliative Care Consideration
Cancer when treatment may failDiseases 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 optionCure vs comfort - Choice leads to parental guiltUncertainty - Rarity makes reliable prognostic information scarceLoss of Security - Fear therapeutic alliance damagedInexperience - Parent and provider with situationPersonal distress -Inability to cope
Chaffee, Prim Care Clin, 2001
Timing is everythingFrequently patients with chronic progressive disease present to the PICU with NO advance directivesDetailed 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 careMay request of reject careUnder defined conditions
May be written or as part of medical power of attorneyBest done by team that knows the patient and family the best
Palliative Care Consults Category of impact Consult
n=25No Consult (Matched) n=123
No Consult
Medical intervention in the last 48 hours of life@
44.8%* 64% 63.2%
CPR attempts 8%* 24% 29%
Withheld vasopressors 56%* 13% 12%
Withheld mechanical ventilation
28%* 4% 4%
Emotional needs noted 92%* 70% 66%
Chaplain consulted 64%* 34% 23%
Social services consulted 80%* 49% 30%@ Transfusions, central lines, intubation, feeding tubes labs, x-ray
Pierucci, Pediatrics, 2001
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 timeReview 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 toneReview what has occurredFind out what is the family’s
understanding
Acknowledge uncertainties and strong emotionsEncourage exploration of emotions
Tolerate silence
The Decision
Make a recommendation about treatmentRedirect 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 wishesSupport the family’s decision
The Wrap Up
Summarize the new planAsk for questionsEnsure family knows how to reach youGive family time alone after you have leftEncourage 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 controlMay not be recognizedConcern about side effects or
Addiction Inadequate knowledgeMultifactorial in origin
Kenny, J Pall Care, 1996, Chaffee, J Pall Care, 2001
Pain Curriculum
Assessment >> monitoring reliefDependence vs addictionPrevent / treat opioid side effectsScheduled and supplementary dosingTitration to effectUse of other specialties and modalitiesCommunication
Sahler, Pediatrics, 2000
Organ Donation
Can save or improve the lives of as many as 25 peopleIs supported by the world’s major religionsDoes not affect funeral arrangementsDoes not cost anythingAffects families positivelyCall to organ donor center is REQUIRED!
Non-Heartbeating Organ Donation
Pediatric candidates may have severe neurologic insults but not meet brain death criteriaDecision to withdraw support made
independently of donationRequires informed consentCertified as dead ( apnea+asystole
for 2 minutes)
Position Paper,Ethics Committee ACCM, CCM, 2001
The END
Be there for the actual deathDon’t ask the nurses to do something you wouldn’t do yourselfAcknowledge your own feelings and those of your colleaguesThey may be completely different
Assist the family with the transitionPaperwork , telephone calls, autopsy,
funeral arrangements
Staff Debrief
“You don’t have time to be sad, you have progress notes to write”All deathsFor 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 feelingsUse of appropriate and inappropriate
self protective mechanisms
Team BuildingReconcile 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 PhasesFact 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 deathPerception 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 sympathyFuneral attendanceAfter 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 ….