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The END: Pediatric Death and Dying Kevin M. Creamer M.D. Pediatric Critical Care Walter Reed AMC.

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Presentation on theme: "The END: Pediatric Death and Dying Kevin M. Creamer M.D. Pediatric Critical Care Walter Reed AMC."— Presentation transcript:

1 The END: Pediatric Death and Dying Kevin M. Creamer M.D. Pediatric Critical Care Walter Reed AMC

2 The Kobeyashi Maru? How we deal with death is at least as important as how we deal with life

3 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

4 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

5 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

6 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

7 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

8 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

9 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

10 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%

11 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

12 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 RespiratoryCardiac 71%37% 82%36% 91%11%

13 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%

14 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

15 Family Presence During Code Pro Families desire to be present Helps with grieving Con Psychological trauma to witnesses Performance anxiety Fear of litigation

16 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

17 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 membersParents Overall24%34.7%* SubgroupsPhysicianAll OthersOutpatient 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?

18 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

19 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

20 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

21 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)

22 "Confirmatory" tests Flat EEG for at least 30 min Confirmation of absence of blood flow Four-vessel contrast angiography or radionuclide imaging Transcranial Doppler

23 Brain Scan: no flow

24 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

25 Life Sustaining Medical Treatment Transplants ECMO Dialysis Mechanical Ventilation Antibiotics Nutrition Hydration GAMUTGAMUT

26 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

27 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

28 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

29 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

30 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

31 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

32 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

33 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

34 Decision conflicts Physician Led team ParentsWhat to do?What next? Clear benefitTreat Reassess Forego treatment Treat*Legal? Ethics? Ambiguous Benefit TreatTrial of Treatment Ethics consult? Forego treatment Don’t Treat (Quinlan case) Palliative care No BenefitTreatTrial of Treatment Ethics? Transfer ? Forego treatment Don’t TreatPalliative care * “Parents not allowed to make martyrs out of their children”

35 All or None Model Treatment primarily directed toward Cure Supportive treatment of physical, emotional, and spiritual needs DEATHDEATH Bereave ment Frager, 1996, J of Palliat Care

36 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)

37 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

38 Continuum model Treatment directed Toward Cure Supportive treatment of physical, emotional, and spiritual needs DEATHDEATH Bereave ment Frager, 1996, J of Palliat Care

39 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)

40 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

41 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?

42 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

43 Palliative Care Consults Category of impactConsult n=25 No Consult (Matched) n=123 No Consult Medical intervention in the last 48 hours of life @ 44.8%*64%63.2% CPR attempts8%*24%29% Withheld vasopressors56%*13%12% Withheld mechanical ventilation 28%*4% Emotional needs noted92%*70%66% Chaplain consulted64%*34%23% Social services consulted80%*49%30% @ Transfusions, central lines, intubation, feeding tubes labs, x-ray Pierucci, Pediatrics, 2001

44 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

45 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

46 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

47 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

48 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.

49 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

50 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

51 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!

52 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

53 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

54 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

55 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

56 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

57 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.

58 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

59 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

60 To our patients ….

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