WRONGFUL LIFE WHAT’S WRONG WITH IT?

1. WRONGFUL LIFEWHAT’S WRONG WITH IT? MARSHA ANDERSON, RNC, LNC, FNE

2. Paradigm Case History • Baby Doe • In 1982 Baby Doe was born in Indiana with Trisomy 21 and TE Fistula. The baby died without surgery per parent’s request and with the support of the Indiana Supreme Court. • In Response to the Baby Doe case, the Reagan administration and the Department of Health and Human Services developed regulations to prohibit hospitals from withholding care from imperiled newborns.

3. REGULATIONS • The regulations that resulted from the Baby Doe case were based on Section 504 of the 1973 Rehabilitation Act that prohibits discrimination against individuals who have handicaps.

4. REGULATIONS • Modified and finalized rules of 1984: • 1. All disabled infants must receive appropriate nutrition, hydration and medication. • 2. All disabled infants must be given medically indicated treatment. • 3. Three exceptions to all disabled infants receiving treatment: chronically and irreversibly comatose, would merely prolong dying, or be virtually futile in terms of survival. • 4. Physician’s “reasonable medical judgment”

5. REGULATIONS • Not adhering to the rules that came out of the Baby Doe case, could prohibit hospitals from getting any federal reimbursements. • The rules did acknowledge that aggressive care was not required for infants who had anencephaly or were extremely premature.

6. REGULATIONS • 2002 , the Montalvo (23 3/7 week infant was resuscitated without parental consent) decision represented the first time courts labeled nonintervention for premature infants as a violation of EMTALA. • 2002, the U.S. Congress and President Bush signed into law the Born-Alive Infants Protection Act (BAIPA) to protect infants who are born alive at any stage of development.

7. REGULATIONS • 2005, the U.S. Dept of Health and Human Services issued enforcement guidelines of BAIPA legislation. Basically that anyone that was reported as withholding care from an infant born alive would be investigated and dealt with accordingly.

8. REGULATIONS • The regulations were challenged in the courts, overturned and abandoned. • Congress amended the Child Abuse Prevention and Treatment Act (CAPTA) to include “medical neglect” and let each state’s CPS enforce it. • The law suggested the establishment of infant care review committees which was the foundation of today’s ethics committees.

9. SURVEY RESULTS • 376 CA Neonatologists were surveyed in 2009 with 140 completed surveys accepted. Of those nearly half were unaware of the BAIPA born-alive definition and almost three quarters were unaware of the enforcement guidelines. • Clearly Neonatologists medical practice are not defined by government regulations.

10. NEGLIGENCE CASES • Wrongful Birth Cases • Wrongful Life Cases • Wrongful Living Cases

11. WRONGFUL BIRTH • Definition: A medical malpractice claim brought by the parents of an impaired child, alleging that negligent treatment or advice deprived them of the opportunity to avoid conception or terminate the pregnancy.

12. WRONGFUL BIRTH • No state recognized a wrongful birth cause of action until after Roe v. Wade (legalizing abortion in 1973) was decided. • Texas was first to allow such a claim in 1975. • In 2002, twenty-two states recognized the wrongful birth cause of action. • It is much more accepted than a wrongful life suit.

13. WRONGFUL BIRTH • Cases are brought by parents of infants with inherited genetic disorders and undiagnosed abnormalities on ultrasound. Parents allege that had they known, they would have terminated the pregnancy. • Cases brought by parents of healthy, yet unwanted infants that were conceived after sterilization.

14. WRONGFUL LIFE • Definition: Medical Malpractice claim brought on behalf of a child born with birth defects, alleging that the child would not have been born but for negligent advice to, or treatment of, the parents. • The child can also bring a suite on their own behalf after reaching majority.

15. WRONGFUL LIFE Phrase originally coined in a 1963 Illinois appellate court decision in which an illegitimate child sued his father for the alleged harm of illegitimacy. Terminology changes now has “wrongful life” as being associated with cases involving impaired children rather than illegitimate ones.

16. WRONGFUL LIFE • First wrongful life case involving an impaired infant, Gleitman V. Cosgrove, was decided in 1967. • First SUCCESSFUL wrongful life case, Park v.Chessin, a 1977 New York appellate court decision. (Decision later overturned by NY Supreme Court).

17. WRONGFUL LIFE • First decision in favor of the wrongful life action to remain standing was Curlender v. Bio-Science Laboratories, CA Appellate court in 1980. • In 1982, the CA Supreme Court, in Turpin v. Sortini, became the first state high court to recognize the wrongful life action.

18. WRONGFUL LIFE A few states have passed legislation prohibiting wrongful life and wrongful birth actions. Wrongful life actions have rarely succeeded in court. Most courts have concluded that impaired existence is preferable to nonexistence and that devising a fair procedure for computing the damages brought about by wrongful life is an impossible task.

19. WRONGFUL LIFE • Some courts, in contrast have granted damages to child plaintiffs, deciding both that life is NOT always preferable to nonexistence, and that damages ARE calculable in these types of cases.

20. INTRINSIC VALUE OF LIFE • The most commonly invoked public policy favoring the refusal to recognize the wrongful birth or life causes relates to the importance of signaling the intrinsic value of human life.

21. SUPPORTING CONSIDERATIONS • Alleviates state courts from having to hear these cases. • Prevents courts from dictating proper practice to physicians. • Limits medical costs by decreasing medical liability to health care providers. • Discourages abortion • Barrier to eugenics

22. WRONGFUL LIFE AND BIRTH CASES The alleged “harm” is NOT caused by a doctor in the way that would be traditionally associated with med mal cases where the allegation would involve some bad action or negligence. • The alleged “injury” is the very existence of a disabled child.

23. WHO SHOULD DECIDE • Factors complicating medical decision making for disabled infants include: • 1. The serious nature of the decision • 2. The inherent uncertainty of proxy decision-making for infants who have never been competent • 3. The pressure of time constraints

24. WHO SHOULD DECIDE • 4. The severe emotional stress on parents who face the unexpected reality of the serious nature of the condition of their newborn infant. • 5. Moral conflicts between parents concerning the appropriate course of action.

25. WHO SHOULD DECIDE • 6. Conflicts between doctors and parents regarding the appropriate treatment. • 7. Difficulty of accurately predicting outcomes for disabled infants. • 8. Inadequate or confusing communication between the parties involved.

26. WHO SHOULD DECIDE • Proxy decision makers should have: • 1. Relevant Knowledge. • 2. Possess information concerning the infant’s familial setting. • 3. Know about alternatives to non-treatment.

27. WHO SHOULD DECIDE • 4. Be an impartial decision-maker in the best interest of the infant involved. • 5. Reach the same treatment decision given identical circumstances.

28. PROXY DECISION MAKERS • 1. Parents • 2. Physicians • 3. Hospital Committee • 4. Courts

29. LEGAL PRINCIPLES • Main purposes of tort litigation: • Compensate individuals for legally recognized harms against their interests. • Promote public policy goals of restraining injurious behavior.

30. NEGLIGENCE SUIT • Plaintiff must demonstrate 4 key elements: • The defendant owed the plaintiff a legal duty • Breach of that duty must be demonstrated • The breach of duty must be the proximate cause of harm to the plaintiff. • Proof of damages incurred by the plaintiff.

31. NEGLIGENCE SUIT • In addition, the courts may require a reasonable formula by which damages can be calculated. • Finally, the courts may consider the impact of the verdict on public policy. (A case that meets all of the above criteria may be unsuccessful if it appears that the consequences would be contrary to a valued public policy).

32. PHYSICIAN’S DUTY • Central theme in wrongful life cases is the defendant not providing the plaintiff with the information needed to make informed choices. • Intent of physician-patient relationship is to promote the patient’s well-being. The provision of appropriate information by the physician to the patient is an integral part of that relationship.

33. LIFE AS A HARM • QUESTION: Is it acceptable under any circumstances to conclude that the life of another is too burdensome for continued existence?

34. BEST INTERESTS • The best interest standard has been proposed as a reasonable approach to decision making by the committee on Bioethics of the American Academy of Pediatrics in 1996. • This approach entails the assessment of life and future prospects strictly from the perspective of the patient.

35. BEST INTERESTS • By upholding a standard for evaluating treatment options that best provides infants with what they need physically, psychologically, and emotionally, physicians uphold their duty to do no harm.

36. Wrongful Life Tort Benefits • Provides a strong incentive to physicians to prevent inaccurate and untimely advice in prenatal counseling and thus fulfills the public policy goal of restraining malpractice. • Prevents infants from being denied necessary resources if the statue of limitations run out on a wrongful birth suit prior to parents filing.

37. WRONGFUL LIFE TORT BENEFITS • Protects children from parents being the only ones awarded damages. Therefore, if the parent relinquishes custody of the child or if the child reaches majority, they will continue to have financial support.

38. WRONGFUL LIVING • Wrongful living is a newer cause of action that is alleged when a health care provider either intentionally or negligently interferes with an individual’s right to refuse medical treatment. • The court system has thus far been reluctant to accept this tort in the same way it has “wrongful life” cases, but more jurisdictions are reviewing cases filed.

39. WRONGFUL LIVING CASES • Anderson v. St Francis-St. George Hospital (1992). Patient with chest pain admitted to hospital (with DNR in place). Nurse resuscitated patient and 2 days later the patient had a paralyzing stroke. He lived an additional 2 years partially paralyzed with his daughter and then in a nursing home.

40. WRONGFUL LIVING CASES • The court found that continued “wrongful” living was not a compensable injury; however, the judge went on to say that this decision should not encourage unwanted lifesaving treatment.

41. WRONGFUL LIVING CASES • When a patient clearly limits the medical measures they are willing to undergo and the health care provider disregards such instructions, the consequences for that breach would include the damages arising from any battery inflicted on the patient, as well as appropriate licensing sanctions against the medical professionals.

42. WRONGFUL LIVING CASES • Some courts find no need for a wrongful living cause of action because the plaintiff can file a battery charge against the health care provider.

43. BATTERY • Definition: Battery is an intentional and wrongful physical contact with a person without his consent that entails some injury or offensive touching. • In a battery case the plaintiff does not have to prove duty or breach of duty. They only have to prove causation and damages.

44. HCA V. MILLER, 2000 • Sidney Miller was born at 23 weeks gestation. Prior to birth, the father had refused to sign a consent form allowing resuscitation. • The hospital staff elected to resuscitate the baby after she gasped, grimaced and cried spontaneously.

45. HCA V. MILLER, 2000 • Apparently the parents did not object to treatment at this time or ever again during her hospital stay. • Sidney had IVH with secondary hydrocephalus. She had cerebral palsy, blindness and severe mental retardation. At age 7 she was unable to walk, talk, feed herself or sit up on her own.

46. HCA V. MILLER, 2000 • Sidney’s parents sued the hospital and the parent corporation for battery and negligence. • The jury returned a verdict of $64,000,000 against the defendants. • The verdict was overturned on appeal, and the Supreme Court of Texas later upheld the appeal.

47. HCA V. MILLER, 2000 • This case attracted national attention. Most interpreted it as further support for the parents’ right to make decisions to withhold care and the need to obtain a court order to override such a decision.

48. HELEN HARRISON’S NICU STORY

49. “THE OFFER THEY CAN’T REFUSE: PARENTS AND PERINATAL TREATMENT DECISIONS” • 2008

50. WRONGFUL LIFEWHAT’S WRONG WITH IT? MARSHA ANDERSON, RNC, LNC, FNE