Futility and Moral Distress

1. Futility and Moral Distress John D. Lantos M.D. Children’s Mercy Hospital Kansas City, MO

2. What we’ll do today • Review history of the “futility debate” • Explain the concept of “moral distress” • Cases of futility and moral distress • When doctors disagree about futility • Examine Texas futility law • Offer a conceptual framework

3. What do we mean by “futility?” • Old-fashioned futility: a treatment that won’t work. • Modern definition: an intractable disagreement between doctors and patients (or surrogates) about the appropriateness of providing marginally beneficial treatment.

4. The (modern) invention of futility: The “Baby Doe” guidelines -1984 • Controversy triggered by a baby with Down Syndrome and esophogeal atresia • Parents did not consent to surgery • Federal government tried to develop criteria for deciding when parental refusals were permissible.

5. Treatment may be withheld only if: • Baby is chronically and irreversibly comatose • The treatment is medical futile • The treatment is virtually futile and inhumane

6. New questions • What, exactly, is “futile?” • Do we know it when we see it? • Is “futile” worse than “virtually futile?” • When is treatment inhumane?

7. Pediatricians views of futility • What do the Baby Doe regulations mean? • Survey of neonatologists about the interpretation of the guidelines: • Trisomy 13 and congestive heart failure • 530g 25 week preemie with large IVH • Congenital hydrocephalus, blindness, severe cognitive impairment • Koppelman et al – NEJM 1988

8. Views of futility • Fundamental disagreement among pediatricians about what the rules required • 22-47% of neonatologists thought treatment required • 18-52% thought treatment not required • Many were uncertain

9. Koppelman’s conclusions • Widespread practice variation • Widespread “moral” variation • Regulations did not clear up ambiguities

10. Around the same time • Futility controversies in the care of adults • Initial focus on CPR

11. Must we always provide CPR? • Case presentation of a woman with metastatic ovarian cancer for whom no further chemotherapy was available • Patient wanted “everything done.” • “Can we just say no?” • Blackhall LJ. NEJM, 1987

12. An avalanche of scholarly writing • Thousands of articles, dozens of books • Hospital policies • Even state laws (well, just Texas)

13. Assessing the futility movement • Medical journals - 50/50 • Courts - “futility” virtually always loses • Legislatures don’t want to touch it • Many hospital policies, questionably legal • Clinical practice?? • Helft et al, NEJM, 2001

14. Moral distress

15. Moral distress Moral distress occurs "when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action.“ Jameton, 1984

16. Moral distress “The painful psychological disequilibrium that results from recognizing the ethically appropriate action, yet not taking it, because of such obstacles as lack of time, supervisory reluctance, an inhibiting medical power structure, institutional policy, or legal considerations“ Corley et al., 2001

17. Moral distress Impossible demands. Policies that violate personal beliefs. Cases where every choice is wrong. Societal norms that violate conscience.

18. Symptoms of moral distress anguish, sleeplessness, nausea, migraine headaches, gastrointestinal upset, tearfulness, a sense of isolation

19. Moral distress in literature Huckleberry Finn - Twain The Bluest Eye - Morrison A Personal Matter - Oe

20. One of the great moments of moral distress in American literature. Huck has to decide whether to help Jim, the runaway slave, to escape to freedom, or to turn him in.

21. “I was a trembling because I'd got to decide, forever, betwixt two things, and I knowed it. I studied a minute, sort of holding my breath, and then says to myself: "All right, then, I'll go to hell” It was awful thoughts, and awful words, but they was said. And I let them stay said.”

22. The very first words of the novel are: “Quiet as its kept…” “The words are conspiratorial. ‘Shhh, don’t tell anyone else. No one is allowed to know this.’ It is a secret between us and a secret that is being kept from us. The conspiracy is both held and withheld, exposed and sustained. The act of writing the book was the public exposure of a private confidence.”

23. “The fact that an abnormal baby was born to me and my wife was a simple accident. Neither of us is responsible. All I can do is leave him at a university hospital and make certain that he’ll weaken and die naturally.”

24. “What was he trying to protect from that monster of a baby that he must run so hard and shamelessly? What was it in himself he was so frantic to defend?”

25. Futility and Moral Distress

26. Conflict creates moral distress Obligations to patient vs obligations to family. Every choice seems wrong. We are forced to choose Undermines ideas of professionalism

27. Example: Emilio Gonzalez case DOB – 12-3-05, G1P0 mother, 35 weeks, 2525g. Feeding difficulty and apnea in NICU Abnormal head and eye movements  MRI – normal AER – auditory neuropathy EEG – seizures DX: Leigh’s disease

28. Emilio Gonzalez case 12/06 (age:1y) – viral illness  PICU  neurologic decompensation 2/07 - Semi-comatose, hypotonic, no gag, vent, N-J tube, sub-acute seizure activity, pneumothraces requiring chest tubes. Doctors recommend DNR, withdrawal of life-support. Mom refuses.

29. Catarina and Emilio Gonzalez, PICU, Brackenridge Hospital. Austin, TX.

30. Ethics committee opinion Treatment is a constant assault on Emilio’s fundamental human dignity. Burdens clearly outweigh benefits. Medically inappropriate to continue aggressive care measures. http://www.lifeethics.org/www.lifeethics.org/2007/03/leighs-disease-long-post-on-end-of-life.html

31. Comfort measures only - Code status should be DNR. - Spiritual and pastoral care for family. http://www.lifeethics.org/www.lifeethics.org/2007/03/leighs-disease-long-post-on-end-of-life.html Ethics Committee Recommendations

32. Outcome of Gonzalez case Mother did not accept recommendations. Doctors sought court order. Court ordered withdrawal of vent. Mother appealed.

33. Catarina Gonzalez, testifying before Texas State Legislature, 2007, “"If they think a mother should give up her son, they're dumb, they're stupid."

34. Futility cases lead to moral distress all around • Mothers forced to watch their children die. • Caregivers forced to provide futile care. • Hospital administration, judge, forced into uncomfortable position. • Moral absolutes clash and crash.

36. Why do parents demand futile treatment? They may not have been told in terms that they understand. They may come with ideas shaped by portrayals of medicine on TV

37. Miracles and Misinformation on Television Diem, Lantos, Tulsky, NEJM 1996

38. Miracles and Misinformation on Television Diem, Lantos, Tulsky, NEJM 1996

42. Resuscitation of E.T. After CPR fails, Elliott's heart-felt love revives his friend. E.T.'s red heartlight glows and he miraculously bursts out: "E.T. Phone home."

44. Take home lesson If you truly love someone, you will not give up, even when the doctors have given up. Love can succeed where medicine fails. There is magic in the world.

45. Furthermore, sometimes doctors disagree among themselves, giving parents mixed messages

46. Baby L • 2 year old • Pregnancy with fetal hydronephrosis and oligohydramnios. • L&D: decels, thick meconium, Apgars 1, 4, and 5. • Stabilized in the NICU. • G-tube at 1 month, trach at 7 months. • Discharged at 14 months. • Paris, et al, NEJM, 1989

47. Baby L • Readmissions with pneumonia and sepsis • Four cardiopulmonary arrests • Mother “continued to demand that everything possible be done.” • Doctors thought further treatment futile and told mother: “No more PICU.”

48. Baby L • Ethics committee: divided. • Mother sought court order for treatment. • Doctors claimed it would violate their conscience to provide treatment.

49. Baby L • Court appointed guardian ad litem • GAL sought a second opinion • “Patient was severely ill, capable of experiencing pain, it was questionable whether she would survive even with mechanical ventilation.” • Consultant was willing to do everything possible to accommodate the parental wishes, • Child was transferred to her care. • Paris et al NEJM 1989

50. Baby L • “Two years later, Baby L remains blind, deaf, and quadriplegic and is fed through the gastrostomy. She averages a seizure a day. Her pulmonary status has improved, but she continues to require intensive home nursing 16 hours a day.” • Paris et al NEJM 1989