Ethics and Care at the End of Life

1. Ethics and Care at the End of Life Jill. E. Boulton MD, FRCPC

2. ILCOR • Multi-national collaborative delegation of Resuscitation Councils • Each ‘RC’ – responsible for researching, evaluating and developing an expert consensus based on peer-reviewed scientific studies related to CPR

3. ILCOR Neonatal Delegation • Australian Resuscitation Council (ARC) • Council of Latin America for Resuscitation (CLAR) • Dutch Resuscitation Council (DRC) • European Resuscitation Council (ERC) • Heart and Stroke Foundation of Canada (HSFC) • New Zealand Resuscitation Council • Resuscitation Council of South America (RCSA) • World Health Organization (WHO) • American Academy of Pediatrics / American Heart Association NRP Steering Committee

4. Neonatal Resuscitation Guidelines • Application: • Intended for practitioners responsible for resuscitating newborns • Apply primarily to neonates undergoing transition from intrauterine to extrauterine life • Also applicable to newborns who have completed perinatal transition and require resuscitation during the first few weeks to months following birth

5. Review of Evidence Studies rated as to: • Level of Evidence – level 1 – 8 • E.g. level 4 - historic, non-randomized, cohort or case-controlled study • Quality of Research Design and Methods • unsatisfactory to excellent • Supportive or Not Supportive of guideline proposed

6. Review of Evidence Class of Recommendation Determined: • Class I – definitely recommended • Highest levels of evidence • Evidence is supportive and compelling • Class II – acceptable and useful • Class IIa – good evidence, results are consistently supportive • Class IIb – fair evidence, results generally but not consistently supportive • Class III – not acceptable, not useful, may be harmful • No supportive high level evidenc • Some studies suggest or confirm harm • Indeterminate • Minimal evidence • Continuing area of research

7. Ethical Principles of Neonatal Resuscitation • Ethical principles for the newborn should be no different from those for older children or adults

8. Common Ethical Principles • Autonomy– respecting an individual’s rights of freedom and liberty to make changes that affect his / her life • Beneficence – acting so as to benefit others • Nonmaleficence – avoiding harming people unnecessarily • Justice– treating people truthfully and fairly Underlie the rationale for obtaining informed consent prior to proceeding with treatments

9. Decision-making Exceptions to Common Ethical Principles: • Life threatening medical emergencies • Patients are not competent to make their own decisions Neonatal resuscitation is often complicated by both of these exceptions!

10. AMA Code of Medical Ethics Statement The primary consideration for decisions regarding life-sustaining treatment for seriously ill newborns should be what is best for the newborn. Factors that should be weighed include: • The chance that the therapy will succeed • The risks involved with treatment and non-treatment • The degree to which the therapy, if successful, will extend life • The pain and discomfort associated with the therapy • The anticipated quality of life for the newborn with and without treatment Code of Medical Ethics: Current Opinions with Annotations, 2004-2005ed. Chicago, IL: AMA; 2002:92 [sect 2.215]

11. Surrogate Decision Makers • Parents are considered to be the appropriate “surrogates” to make the decisions in the best interests of their children • To fulfill this role responsible, they need – • relevant, accurate and honest information about the risks and benefits of each treatment • adequate time to consider each option • adequate time to ask additional questions • opportunity and time to seek other opinions

12. Non-Initiation or Withdrawal of Resuscitation • No law mandates attempted resuscitation in all circumstances • To withhold or withdraw support (resuscitation) is considered appropriate if there is general agreement among healthcare professionals and with the parents, that further resuscitation efforts would serve no useful purpose – ‘futile’ • Non-Initiation of resuscitation or later withdrawal of support are generally considered to be ethically equivalent

13. Non-Initiation or Withdrawal of Resuscitation • Consistent and coordinated approach to individual cases by the obstetric and neonatal teams and the parents – an IMPORTANT GOAL • Regional guidelines need to be developed according to current regional outcomes • Parents must be involved in decision making process • Parents and families require advanced preparation, coordination, and skillful communication with cultural sensitivity • Avoid making rigid promises; obtain all information first

14. Prenatal Counseling Before High-Risk Birth • Establish relationship with parents • Consistent information, coordinated care • Issues • Survival/disability chances • “Comfort care only” • Preventing pain and suffering • Documentation

15. Estimating Gestational Age/Fetal Weight Before Birth • Unless in vitro fertilization, obstetric dating is accurate to +/- 1 to 2 weeks • At the extremes of prematurity, advise parents that decisions made before birth may need to be modified in the delivery room depending on postnatal assessment

16. Non-Initiation of Resuscitation: Prognosis Certain • Where gestation, birth weight, and/or congenital anomalies are associated with almost certain early death, and unacceptably high morbidity is likely among the rare survivors, resuscitation is not indicated

17. Guidelines • Non-Initiation of resuscitation of extremely preterm (<23 weeks and/or <400g) • Class IIb recommendation • Non-Initiation or discontinuation of resuscitation in babies with confirmed or overt lethal anomalies/Chromosomal abnormalities • Indeterminate recommendation but widely practiced

18. Non-Initiation of Resuscitation: Prognosis Uncertain • In conditions associated with uncertain prognosis, where there is borderline survival and a high rate of morbidity, and where the burden to the child is high, parental desires regarding initiation of resuscitation should be supported

19. In conditions associated with a high rate of survival and acceptable morbidity, resuscitation is NEARLY ALWAYS indicated • e.g. Preterm infants with Gestational Age 25 weeks

20. Science? • Recommendations in this area are limited by mostly level 4 and 5 data • ILCOR worksheets indicate that “non-initiation or discontinuation of resuscitation in the delivery room of some extremely preterm (<25 weeks and/or 500g) newborn babies” could also be supported as a Class II b recommendation • Statistics and practices vary by country and region

21. Canadian Guidelines: • The CPS Fetus and Newborn Committee will be releasing a new position statement for the management of babies ≤26 weeks gestation • Previous Statement: • “Management of the woman with threatened birth of an infant of extremely low gestational age” – released in 1994

22. 1994 Canadian Recommendations • < 23 wks: resuscitation not offered (no choice) • 230-6 wks: discourage resuscitation; parental informed decision • 240-6 wks: parental informed decision • 250-6 wks: recommend resuscitation • > 26 wks: active resuscitation & treatments (no choice)

23. Resuscitation Against Parents’ Wishes • High survival rate, acceptable morbidity risk • Legal and ethical obligation to treat the baby • Ethics consultation helpful but may not be possible • In the end the physician may decide that the parents are not acting in the best decisions of the baby – Tread Lightly! • Accurate documentation

24. Discontinuation of Resuscitation • Discontinuation of resuscitation efforts may be appropriate after 10 minutes of absent heart rate following complete and adequate resuscitation efforts • Class II b recommendation

25. Science? • The ILCOR review was of 11 papers with only 2 recent papers dealing with persistent asystole immediately after birth. • All papers were Level 5 evidence – case series compiled in serial fashion and lacking a control group and were deemed “fair” in terms of research design and methods

26. Jain, J Paeds 1991 • 93 apparently stillborn infants with Apgars of 0 at 1 minute of age • 33 survived, 14 with “normal outcome” • 58/93 infants had an Apgar of 0 at > 10 minutes • Only one survived and had an abnormal outcome

27. Haddad, Am J Obst Gyn 2000 • 33 babies with Apgars of 0 at 1 and 5 minutes • 70% preterm • 11 survived but only 2 had Apgars of 0 at > 10 minutes – both lost to follow-up

28. Care at the ‘End of Life’ • Caring for the dying baby • Comfort, pain relief • Caring for parents of a baby who dies • Encourage parental/family presence and holding • Consistent, sensitive, and compassionate care • Be sensitive to cultural practices and spiritual needs • Helping staff through the grieving process

29. Care of Family After Baby’s Death • Consistent, sensitive, and compassionate care • Advance preparation, coordination, training, practice • Skillful communication • Follow-up visits, support groups

30. Thank you