1. ANGELS Perinatal Conference April 7, 2011

2.  Background and definitions  Important aspects of palliative care services  Parents’ perspectives  Practical applications

3. Annual Summary of Vital Statistics 2008. Pediatrics 2011; 127:146-157.

4.  US ◦ Infant mortality: 6.59 per 1000 live births ◦ Neonatal mortality: 4.27 per 1000 live births  Arkansas ◦ Infant mortality: 7.35 per 1000 live births ◦ Neonatal mortality: 4.38 per 1000 live births Annual Summary of Vital Statistics 2008. Pediatrics 2011; 127:146-157.

6.  Cook, Watchko. J Perinatology 1996 ◦ 82% of NICU deaths occurred after decision to limit, withhold, withdraw treatment  Wall, Partridge. Pediatrics 1997 ◦ 73% of deaths in the ICN attributable to withdrawal or withholding of life-sustaining treatment  Singh, Lantos. Pediatrics 2004 ◦ 42% of NICU deaths involved active withdrawal

7.  Capable of living, physically fitted to live  Having reached such a stage of development as to be capable of living, under normal conditions, outside the uterus  Capable of normal growth and development

8.  Viable ≠ Liveborn  Viable ≠ Response to Resuscitation

9. 102 infants BWT 640 ± 86g GA 24.9 ± 1.5 weeks Singh, et al. Pediatrics 2007; 120:519-26.

10.  Previable  Periviable  Nonviable  Unresponsive to therapy  Unduly burdened

11.  Saunders, 1969  Duff and Campbell, 1973  Whitfield, 1982  Initiative for Pediatric Palliative Care (IPPC), 1998  Catlin and Carter, Leuthner

12.  Encompasses end of life care  Comprehensive care of the patient and family: medical, psychosocial, emotional, and spiritual needs  Multidisciplinary team approach  Focus is on quality of life for the child and support for the family

13.  Provide appropriate treatment  Maximize quality of life  Ensure peaceful and dignified death  Support families through the dying and bereavement process

14. “ The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick.” E. Cassell

15. “There is nothing (more) we can do” “Withdrawal of care” “Withdrawal of support” “Letting nature take its course” o Let families know they will not be abandoned o Assure families we will continue to care for their infant

16.  When early death is very likely and survival would be accompanied by high risk of unacceptably severe morbidity, intensive care is not indicated  When survival is likely and risk of unacceptably severe morbidity is low, intensive care is indicated  For cases that fall in between these two categories, in which prognosis is uncertain but likely to be poor and survival may be associated with a diminished quality of life, parental desires should determine the treatment approach

17.  Certainty of diagnosis  Certainty of prognosis  Meaning of that prognosis to the family

18.  Stillborn infants  Infants at the limits of viability  Infants with lethal birth defects/anomalies  Infants unresponsive to ongoing intensive care, or for whom such care is more burdensome than beneficial

19.  Genetic problems  Renal anomalies  CNS abnormalities  Cardiac disease  Structural anomalies

20.  Severe brain injury  Overwhelming sepsis  NEC and short gut  Severe lung disease  Unable to wean from ECMO

21.  Non-initiation of intensive care  Non-escalation of intensive care  Active withdrawal of life-sustaining treatment

22.  Location  Respect for cultural and spiritual needs  Preparation and support for the family  Symptom management  Meaningful rituals

23.  Begins at the time of diagnosis  Alternative to termination or aggressive treatment in the NICU  Multidisciplinary care for the pregnancy  Intrapartum management and development of a birth plan

24.  22-25 weeks completed gestation  Medical treatment changes from “clearly futile” to “clearly beneficial”  Survival increases with each completed week of gestation  High incidence of neurodevelopmental disability in survivors

25.  Inaccuracy of gestational age and fetal weight estimates  Other variables are important  Uncertainty of outcome/prognosis  Differences between healthcare workers  Parental expectations  Ethical issues

26.  Accurate and consistent information  Balance honesty with hope  Joint decision-making  Trial of therapy may be reasonable

27. Blanco, et al. Pediatrics 2005; 115:e478-87.

29.  Information ◦ Clear, concrete, consistent, compassionate, timely  Involvement in decision-making  Control  Emotional support  Competent and compassionate medical care

30.  Appropriate environment  Post-partum needs of the mother  Support and involvement of siblings  Preparation for the death and bereavement process

31.  Respectful treatment of the infant  Symptom control  Creating memories  Autopsy and organ/tissue donation

32.  Interpret medical information  Day-to-day care of the infant  Relationships with the family  Creating memories

39. www.mamiespoppyplates.com

40. Gale, Brooks. Advances in Neonatal Care. 2006; 6: 37-53.

41. The Initiative for Pediatric Palliative Care www.ippcweb.org  Holistic care of the child  Support of the family unit  Involvement of the family in decision-making and care planning  Relief of pain  Continuity of care  Grief and bereavement support

42.  Alive Alone www.alivealone.org  Balloon Release www.balloonrelease.com  Bereaved Parents USA www.bereavedparentsusa.org  Grief Watch www.griefwatch.com

43.  The Compassionate Friends www.compassionatefriends.org www.compassionatefriends.org  Caring Connections www.caringinfo.org  Kaleidoscope Kids www.kaleidoscopekids.org  Center for Good Mourning - Arkansas Children's Hospital www.archildrens.org

44. “ The goals of neonatal care may need to be expanded beyond seeking mere survival. Successful care also must include supporting a family in finding meaning in their baby’s life, however long that might be. Failure may be judged best not in mortality statistics, but in how much unnecessary suffering for infants and families remains unattended.” Carter. Neoreviews 2004; 5:e484-89.

45. “… For You created my inmost being; You knit me together in my mother’s womb…Your eyes saw my unformed body; all the days ordained for me were written in Your book before one of them came to be…” Psalm 139:13,16 The goal is to add life to the child’s years, not simply years to the child’s life.