The END: Pediatric Death and Dying

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 1st 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 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

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. 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% CPR Outcomes Innes, 1993, Arch Dis Child, Sichting 1997, CCM (A), Chan 2001, CCM (A) Schindler, 1996 NEJM

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. 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

17. “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 G A M U T

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. 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 Ethical / Working principles 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 * “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 D E A T H Bereavement 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 D E A T H Bereavement Supportive treatment of physical, emotional, and spiritual needs 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. 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

41. 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

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 @ 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