Terminally Ill & Severely Disabled Newborns

1. Terminally Ill & Severely Disabled Newborns Rels 300 / Nurs 330 March 2014

2. 300/330 - appleby Case studies in end-of-life care Baby Messenger

3. 300/330 - appleby • Born at 25 weeks gestation – 1 lb. 11 oz. • 25 to 50% chance of survival • 90% chance of cerebral hemorrhage and neurological damage • Generally, a 30% chance of discharge with no ongoing major disorders • Parents asked that “no extraordinary measures be taken” to preserve his life • HCPs resuscitated, intubated and incubated the newborn infant • Father, Gregory Messenger, given time alone with his son, removed the ventilator – 1 hr. after birth • No NICU staff intervened; baby died shortly after

4. 300/330 - appleby • Prior to the premature birth: • Is it appropriate for parents to request no aggressive interventions? • Should life-sustaining treatments be withheld? • If the baby is born alive, should he be resuscitated and intubated at birth? • Whose decision is this to make? • How should it be made? • How should conflict be resolved?

5. 300/330 - appleby • If the infant survives the 1st 48 hours, and tests reveal significant disease, injury or disability: • May life-sustaining treatment be withdrawn? • e.g., respirator, nutrition • Who should decide whether to withdraw treatment?

6. 300/330 - appleby Would there be any conditions – in this case, or in similar cases – under which you think it might be appropriate to euthanize severely impaired / handicapped newborns with a grim prognosis instead of waiting for them to die? Gregory Messenger was charged with manslaughter in the death of his infant son • Do you think he was convicted or acquitted of this charge?

7. 300/330 - appleby A Film by Lena B. Moreco http://www.nfb.ca/film/medicine_under_influence

8. 300/330 - appleby The Groningen Protocol for Euthanasia in Newborns (2005) • In the Netherlands, voluntary euthanasia for competent persons 16 years of age and over has been legally practised since 1985 • Neonatologists believe that deliberate life-ending procedures are also acceptable for newborns and infants • Some infants experience unrelieved pain and suffering • Infants with disorders associated with severe and sustained suffering should not be kept alive when their suffering cannot be adequately alleviated

9. 300/330 - appleby Is Death preferable to Life for Baby Messenger? DEATH LIFE • Respect for the human dignity of Baby Messenger • Respect for the autonomy of the parents • Potential harms and benefits • Non-discriminatory access to appropriate medical care • Respect for the human dignity of Baby Messenger • Respect for the autonomy of the parents • Potential harms and benefits • Non-discriminatory access to appropriate medical care

10. 300/330 - appleby Groningencategories for which euthanasia might be considered Category #1 Infants with no chance of survival; infants who will die soon after birth, despite optimal care; for example, infants with a severe underlying disease, such as lung and kidney hypoplasia American Academy of Pediatrics • It is inappropriate for life-prolonging treatment to be continued when the condition is incompatible with life or when the treatment is judged to be harmful, of no benefit, or futile. • http://pediatrics.aappublications.org/content/119/2/401.full.pdf http://www.nejm.org/doi/full/10.1056/NEJMp058026

11. 300/330 - appleby Groningen category #2 Infants with a very poor prognosis who are dependent on intensive care; infants that may survive after a period of intensive treatment, but whose prognosis is very poor; for example, infants with severe brain abnormalities (anencephaly, trisomy 13 or 18) Anencephaly is a congenital fetal defect involving the absence of the higher brain, sometimes with the absence of the brain stem, but usually with the brain stem intact. • diagnosed at 10-12 weeks; or at 15-18 weeks • 95% of anencephalic neonates will not survive more than a week after birth • a few infants have survived for 3-4 months

12. 300/330 - appleby Groningen category #3 Infants determined to have unbearable pain and suffering; infants for whom a very poor quality of life is predicted; for example, a child with the most serious form of spinabifida [a neural tube defect] • Spina bifida = open spine • Myelomeningocele is the most serious form • exposed nerves damaged • occurs during first 4 weeks of pregnancy • fifty years ago, only 10% of babies born with spina bifida survived their first year • now, 90% survive with medical care & assisted devices

13. Was death preferable to life for Tracy Latimer? ROBERT LATIMER: What parent would wish for their child a life of incurable pain and suffering? 300/330 - appleby

14. 300/330 - appleby “For babies who either cannot be treated at all or who face a future of one surgery after another, none of which is likely to improve the quality of their lives to any marked degree, the prevention of later suffering that cannot be alleviated would seem to be just as morally valuable as the relief of present unbearable pain.” Quote fromLindemann, Hilde and Marian Verkerk. 2008. "ENDING THE LIFE OF A NEWBORN: The Groningen Protocol." The Hastings Center Report 38 (1): 42-51. http://search.proquest.com/docview/222369020?accountid=13803 • Is this a case where that might be so?

15. 300/330 - appleby Is death preferable to life for Walker Brown?IAN BROWN: “I'm glad I never had to decide whether my strange, lonely boy ought to exist”

16. 300/330 - appleby “ACTIVELY ending a life can sometimes be more humane than waiting for a person to die, and in the desperate cases where death does not come of its own accord to end unendurable suffering, the morally right thing to do is to summon it.” Quote fromLindemann, Hilde and Marian Verkerk. 2008. "ENDING THE LIFE OF A NEWBORN: The Groningen Protocol." The Hastings Center Report 38 (1): 42-51. http://search.proquest.com/docview/222369020?accountid=13803

17. 300/330 - appleby Eduard Verhagen,  Pieter J J Sauer. (2005). The Groningen Protocol - Euthanasia in Severely Ill Newborns.  The New England Journal of Medicine, 352 (10), 959-62 Requirements that must be fulfilled for euthanasia to be authorized: • The diagnosis and prognosis must be certain • Hopeless and unbearable suffering must be present • The diagnosis, prognosis, and unbearable suffering must be confirmed by at least one independent doctor • Both parents must give informed consent • The procedure must be performed in accordance with the accepted medical standard

18. 300/330 - appleby “This feature documentary tackles a taboo subject: the tragic effects of life-sustaining medical treatment on infants. Through the courageous testimony of a handful of doctors and therapists as well as the shocking stories told by devoted parents of disabled children, this film denounces the lack of support offered to science's little "miracles." Once saved, the children are more or less left to their fate by a medical system that does not give them the therapy needed to improve their quality of life and develop to their fullest potential.” https://www.nfb.ca/film/medicine_under_influence

19. 300/330 - appleby Is Life better than Deathfor 9-yr. old Vincent?

20. 300/330 - appleby If you had been Baby Messenger’s or Tracy Latimer’s or Vincent’s parents, what choices would you have made? at what stages? How would you have been affected if you had been a member of the health care team in a pediatric intensive care unit?

21. 300/330 - appleby 1896 World Fairin Berlin Premature babies in incubators were displayed in the “preemie exhibit.” John Lantos says: “The gothic fairy tale of preemies as carnival exhibits became the parable of medical progress that NICU’s represent.”