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 ….