What was happening in 1968? 1 10/13/2015 Apollo 8 orbits the Moon - PDF document

10/13/2015 Pediatric Brain Death and other end of life issues C.C. DeLine, MD Pediatric Neurologist What was happening in 1968? 1

10/13/2015 Apollo 8 orbits the Moon 747 Jumbo Jet introduced Martin Luther King, Jr. and Robert F . Kennedy were assassinated. JAMA published: A Definition of Irreversible Coma Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death JAMA , Aug 5, 1968. Vol 205 No 6 2

10/13/2015 Two reasons were given for the need for this definition Reason 1 Improvements in resuscitative and supportive measures have led to increased efforts to save those who are desperately injured. Sometimes these efforts have only partial success so that the result is an individual whose heart continues to beat but whose brain is irreversibly damaged. The burden is great on patients who suffer permanent loss of intellect, on the their families, on the hospitals, and on those in need of hospital beds already occupied by comatose patients. Reason 2 Obsolete criteria for the definition of death can lead to controversy in obtaining organs for transplantation. 3

10/13/2015 Characteristics of Irreversible Coma Unreceptivity and unresponsivity • No movements or breathing • No reflexes • Flat encephalogram • All tests were repeated in 24 hours. No hypothermia • No CNS depressants • UPDATES 1987 and 2011 4

10/13/2015 Guidelines for the Determination of Brain Death in Infants and Children: An Update of the 1987 Task Force Recommendations Thomas A Nakagawa, Stephen Ashwal, Mudit Mathur, Mohan Mysore and the Society of Critical Care Medicine, Section on Critical Care and Section on Neurology of the American Academy of Pediatrics, and the Child Neurology Society Pediatrics 2011: 128, e720 Can be found online at http://pediatrics.aappublications.org WHEN and HOW are brain death examinations performed? P atience P lanning P rocedure 5

10/13/2015 Events leading to brain death are usually catastrophic Motor vehicle crashes • Drowning • Trauma • Hypoxic insult (shock suicide) • Anesthesia or surgical complications • Families must be educated and updated throughout the course of their child’s event. Information provided must be realistic and consistent. The family should be informed of the planned examination and should be invited to witness it, if desired. 6

10/13/2015 Brain Death Examination Temperature > 95 ˚ • Systolic B/P w/i 2 SD for age • No sedatives • No metabolic intoxication • No neuromuscular blockade • Brain Death Examination a. flaccid tone, no pain response b. mid-dilated unreactive pupils c. no corneal, gag or cough reflexes (no root or suck in neonates) d. absent oculovestibular responses e. no spontaneous respiratory effort (over ventilator) Brain Death Examination APNEA TEST No spontaneous respiratory efforts with PaCO 2 ≥ 60 mm Hg and ≥ 20 mm Hg increase above baseline 7

10/13/2015 Brain Death Examination ANCILLARY TESTING Only required when apnea test cannot be completed or if there is uncertainty about the results of the neurological examination. Brain Death Examination ANCILLARY TESTS Electroencephalogram • Cerebral Blood Flow • APPENDIX 8 Algorithm to Diagnose Brain Death in Infants and Children Thomas A. Nakagawa, et. al., Pediatrics 2011; 128: e720-e740 8

10/13/2015 2 physicians must perform the examination independently 12 ˚ apart for 31d – 18 y/o • 24 ˚ apart for neonates • The family should be informed of time of exams and be allowed to directly observe, if desired. NO secrets NO sudden announcements NO “rush to judgement” 9

10/13/2015 Brain death IS death. So, how is Jahi McMath still “alive” in New Jersey? HIPAA prevents us from knowing the medical facts of the case. The media confuses brain death and withdrawal of support. They ARE two different things. 10

10/13/2015 Children do die. < 1 y/o Birth defects 20% • Prematurity 18% • Pregnancy complications 7% • SIDS 7% • Accidents 5% • (23,440 in 2013) Age Group 1-4 5-9 10-14 15-24 Cause Accidents 32% 31% 27% 41% Birth Defects 12% 7% 6% 1% Cancer 8% 18% 15% 5% Suicide 0% 0% 13% 17% Homicide 8% 5% 5% 15% Heart Disease 4% 3% 3% 3% Respiratory Disease 1% 3% 3% 3% Stroke 1% 1% 1% 1% 2013 Statistics 4,068 2,427 2,913 28,486 11

10/13/2015 Many of these deaths are sudden and unpredictable, but others occur after long, complicated courses, including multiple hospitalizations and frequent contact with health care providers, and their technology. Understanding the DO NOT ATTEMPT RESUSCITATION ORDER 1991 – Guidelines for the appropriate use of Do-Not-Resuscitate Orders published by AMA Council on Ethical and Judicial Affairs 12

10/13/2015 Natural Death Act Allows a patient (or surrogate) to execute a directive for the withholding or withdrawal of life- sustaining procedures in the event of a terminal illness. The purpose of CPR is to prevent sudden and unexpected death. CPR is contraindicated in Terminal illness • Irreversible illness • 13

10/13/2015 The DNAR order is vastly underutilized in our pediatric patient population. CASE 1 James is a 14 y/o diagnosed with leukemia and presents with his 3 rd relapse which has not responded to chemotherapy. His condition has been steadily deteriorating and his chances of recovery are extremely poor. The family has indicated to his nurse they want a DNRO. CASE 1 Is the family’s request appropriate? • What should the nurse do? • Can the resident write the order? • When does the order take effect? • Doe this mean that there should be no • labs or x-rays, no blood transfusions, no IVs, no antibiotics, etc.? 14

10/13/2015 CASE 1 James becomes air hungry, his HR and BP are falling. The resident is called and wants him transferred to the PICU. Should James be transferred to the PICU? • Who else should be called? • What do you think would be the best course of action? • CASE 2 Angelica is a 5 y/o with severe CP , intellectual disability, epilepsy, severe scoliosis, restrictive lung disease, obstructive sleep apnea and progressive heart failure. She has a feeding G- tube and is on BiPap at home. She is admitted with aspiration pneumonia and respiratory distress. CASE 2 Should the family be approached about a • DNAR? If yes, why? The family agrees to a DNARO. • Her respiratory disease worsens. • Should she be intubated and ventilated? • 15

10/13/2015 CASE 2 The family thinks she is suffocating and wants medicine given to comfort her. She is already on a morphine drip. Her doctor does not want to give her more because he is afraid she will stop breathing and be the case of her death. How much morphine is too much? • Is this euthanasia? • Which children are candidates for DNAR orders? Terminally ill • Incurable disease • No QOL • DNAR does not mean termination of care. 16

10/13/2015 DNAR orders do not address Nutrition • Hydration • Antibiotics • Pain control • Blood products • Surgery • When in hospital, patients with DNAR need more care, not less. Many patients with DNAR orders leave the hospital. Dying with Dignity Presence of loved ones • Honor patient/family requests • Provide emotional/spiritual support • Privacy • Grieving time for family • Comfort measures • 17

10/13/2015 Societal change begins with education. Health care providers should be leaders. You don’t have to do everything that you can. Cure sometimes. Relieve occasionally. Comfort always. 18