THE QUESTION OF FUTILITY

1. THE QUESTION OF FUTILITY Ethical Considerations

2. Futility is a problem in medicine that will not go away. The question is intimately related to medicine’s stunning technological progress over the past 20 years…and to society’s changing attitude about self-determination.

3. “The Technological Imperative” The economist, William Fuch, refers to our society’s attitude and valuing of technology as “the technological imperative.” What technology we have developed and is at our disposal, we believe we must employ.

4. Today We... • rescue 500 gram neonates • perform coronary artery bypasses on octogenarians, and • do craniotomies on 83 year olds. … Because we can.

5. Futility is one of the newest (1990s) additions to the lexicon of bioethics. Physicians, ethicists, and public policy pundits are increasingly concerned about patients and families who insist on receiving life sustaining treatment that others judge to be futile.

6. A clear understanding of futility has proven to be illusive, however. Many clinicians view futility the way one judge viewed pornography: they are not able to define it, but they know it when they see it.

7. Hippocrates allegedly advised physicians “to refuse to treat those who are overmastered by their disease, realizing that in such cases medicine is powerless.”

8. Socrates apparently offered a sharp warning to doctors who were tempted by money to prescribe futile interventions. He warned that they may suffer the same fate as Asclepius, a reputable physician who was killed by lightning after being “bribed with gold to heal a man who was already dying.”

9. “Futility” Recognized in Law and Policy • That futility is a recognized concept, which is understood and accepted, is indicated by both law and policy. • The so-called Baby Doe law exempts physicians from providing treatment that would be “virtually futile.” • The Council on Ethical Affairs and Bylaws of the AMA has concluded that physicians have no obligation to obtain consent for a DNR order when CPR is deemed futile.

10. What is the Question? It is meaningless to say that an intervention is ”futile;” one must always ask, “Futile in relation to what?”

11. Drawing Distinctions There is a necessary distinction to be drawn between probabilities of medical or physiologic benefits versus non-benefit (futility), and moral judgements, that is, whether they are worth it or not-- either in terms of overall patient welfare or in terms of economic value. We might fully agree about the statistical probability of certain medical outcomes but fully disagree about whether those outcomes are worth it or not.

12. Helga Wanglie’s Ventilator Mrs.Wanglie was a 86 year old woman in Minnesota who had been dependent on mechanical ventilation and in a persistent vegetative state for more than a year, 1989-90. Her husband insisted that she believed in maintaining life at all cost, and that “when she was ready to go…the good Lord would call her.”

13. Helga Wanglie Her physician, Stephen Miles, on the other hand, believed that the continued use of mechanical ventilation and intensive care was futile. He, along with colleagues, sought to have the court appoint an independent conservator with responsibility for making medical decisions on her behalf. The judge denied the petition and reaffirmed the authority of her husband as legal surrogate. Mrs.. Wangle died three days later.

14. Physiological Futility An intervention is considered to be physiologically futile when: the physician and his or her consultants, consistent with the available medical literature, conclude that further treatment cannot, within a reasonable possibility, cure, ameliorate, or improve the patient’s health status.

15. Patient’s Values ? The issue of futility has, in some sense, arisen because of our society’s coming to respect and value patient autonomy, the right of all humans to be self-governing; to make their own decisions about that which bears on their well- being or personal interest….to be the “author of their own life.”

16. Mantra of Bioethics Three core principles of bioethics are: • Beneficence / Non-maleficence • Respect for Autonomy • Justice (fairness)

17. Informed Consent • Informed consent is first and foremost a concept of ethics, and only secondarily a legal doctrine. • Informed consent emerges as an imperative in bioethics as a result of balancing of the principle of beneficence with the principle of respecting the autonomy of the patient. • Informed consent is core to the notion of professional bioethics today...

18. Paternalism • Prior to the rise of the cultural emphasis on individual autonomy (pre-1960s ?) physicians were guided primarily by the principle of beneficence…doing that which would, in their judgement, and in accordance with their values, benefit the patient. • Today, benefiting the patient, yet not respecting the patient’s autonomy by gaining an informed consent, is considered paternalistic, therefore unethical, and is illegal!

19. Today , the “problem of futility” seems to have emerged as a result of both our “technological imperative” and our patients coming to believe that respecting their autonomy means we must provide whatever treatment they deem be of worth or they value, even if physiologically futile.

20. Among the interesting issues this raises is respecting the autonomy of the physician; to say nothing of the misuse of societal resources in the form of “opportunity costs”...dialysis versus vaccinations. The dollars spent on bubble gum are not available later to purchase milk.

21. Wanglie Redux While we may feel that Oliver Wanglie was wrong to insist that his wife, Helga, be kept on the ventilator, he was surely operating within the conventional boundaries of respecting patient autonomy, that is, acting as a surrogate, he was free to decide that, even in the face of hopeless medical odds (physiological futility), it was still worth it from his moral perspective to keep his wife on the ventilator.

22. We error in our understanding of the evolvement of the concept of respecting patient autonomy when we make the judgement that removing the ventilator is purely a medical judgement. • A purely medical perspective is insufficient in face of the notion of autonomy that has developed, which allows patients’ value judgements to intervene.

23. At the heart of the court’s support of Oliver Wanglie was an unwillingness to compromise that concept, even if it results at times, in decisions considered strange or even ridiculous. • To allow physicians to make probabilistic medical judgments of futility, and then to have those judgments considered tantamount to a judgement about the value of a treatment, would have been a regression from a standard of autonomy that reserved value judgements to patients.

24. This is, of course, a highly individualistic notion of autonomy, giving individuals enormous power to live and die by their own values, however much they may fly in the face of medical judgment. • The underlying assumption is that we cannot, or should not, reach some sort of common social judgment about moral validity in such cases.

25. Assumption Seems Intolerable • This underlying assumption seems to be an assumption our society cannot endure. • Individual choice trumping all else is not compatible with two other insistent pressures: • Physician autonomy and integrity, the value of not being forced (coerced) to provide medically (physiologically) useless treatment, and • economic scarcity, which makes deference to patient values seem both irresponsible and unaffordable.

26. A Major Difference • It seems intuitively obvious, that there is a great difference between acknowledging a patient’s autonomy and therefore right to say “no” to treatment, and that same patient’s right to demand treatment. • Up until this time in history, we have had much less occasion to invoke the latter point.

27. How Can We Proceed? • Societal consensus on a shared set of values is critical. We must come to a ‘common sense’ of the nature of health, the nature and goals of medicine, and what constitutes a good society. • Democratic processes are essential, both at a societal level, and on an individual case level, in forming consensus. • Results of thinking need to be sensitive in balancing three ingredients: patient rights, physician integrity, and the need to limit or ration health care resources.

28. Where Are We? • Slowly, but increasingly, society is coming to terms with issues of value in futility. • Individuals, as they are living longer, are coming to acknowledge the inevitability of death, and are desiring a good death, rather than an inevitable death postponed, and a life sustained and prolonged by our plethora of technological support systems. • And hospitals are developing policies on “futile treatment.”

29. What UK Has Done • Today at UK we have developed what we believe to be a highly thoughtful and pragmatic policy for dealing with the issue of futile treatment. And, our policy is in keeping with standards that are evolving nationally. • It “process-driven,” that is, democratic, and is not a procedural mandate such that when certain criteria are present one determines “futility.”

30. UK Policy • Our policy on futile treatment is contained within the Hospital policy, “Withholding/Withdrawing Potentially Life Sustaining Treatment.” • Note that we cautiously and correctly speak of “futile treatment” (or intervention) not “futile care.” • This linguistic emphasis is grounded in the believe in the value of all “care.” Allowing the patient to die peacefully and free of suffering is caring for the patient.

31. Definition of Futility • Treatment is appropriately considered futile when: • it will not result in a cure, improvement, or amelioration of the patient’s condition; OR • it will not restore a quality of life satisfactory to the patient; OR • it will only increase or prolong the patient’s suffering.

32. Determining Futility If the attending physician, in consultation with the patient’s care team, decides that certain therapeutic interventions are futile for the patient, the physician should discuss carefully with the patient (or proxy) the nature of the ailment; the care options available and useful to the patient, including palliative and hospice care; the prognosis; and the reason why certain interventions are futile for the patient. If the patient (or proxy) agree then treatment is discontinued.

33. Disagreements If the patient (or proxy) and the attending physician do not agree regarding the “futility” of a proposed course, the attending will discuss with the patient (or proxy) obtaining an additional medical opinion on the patient’s case from another Hospital physician. The physician who will provide the second opinion must be selected by the chief of staff.

34. Support Staff If Hospital support services such as pastoral care and social services have not been involved with the patient’s case, the patient (or proxy) should be encouraged to use these services when a futile treatment decision is in the process of being made.

35. Second Opinion If a physician offering a second opinion on futile treatment concurs with the attending physician, the patient (proxy) and the patient’s family and/or significant others should be given adequate time to consider this additional opinion.

36. With Continued Patient Insistence ... If after considering the opinion of the attending physician and a concurring opinion of the consulting physician, the patient (or proxy) continues to desire interventions that have been judged to be futile, and if the attending physician does not want to proceed with such interventions, the attending should:

37. Initiate a consultation process with the Hospital Ethics Committee; • inform the patient (proxy) that this process has been initiated; • inform the patient (or proxy) that the patient is at full liberty to effect transfer to another hospital or to another physician.

38. Consultant Disagreement If the consulting physician disagrees with the attending physician about the treatment of the patient (or proxy), the chief of staff will facilitate the patient’s transfer to another physician, who is able to carry out the requested intervention with integrity.

39. Ethics Consultation If the patient (or proxy), or physician initiates consultation with the Ethics Committee, the case will be presented to the Committee for review and recommendation. Both the patient (or proxy) and the attending physician will be asked to speak with the Ethics Committee regarding their respective perspectives.

40. The Hospital Ethics Committee serves only in an advisory capacity to the Hospital chief of staff. • The Committee makes its recommendation to the chief of staff. • If the Committee and chief of staff agree with the attending physician on futility, such treatment will not be initiated, or will be discontinued, and the physician will provide palliative and compassionate care. • If the Ethics Committee and chief of staff disagree with the attending, and if the attending wishes to withdraw from the case, the chief of staff will attempt to secure another attending physician either in this Hospital or another.

41. “Denial of Death” • Humanity has an inherent psychological predisposition to seek immortality, and to deny death. Many scholars have written extensively and insightfully on this topic, among the more notable: Sigmund Freud, Ernest Becker, and Norman Brown. • Recommended “beach reading:” The Denial of Death, Ernest Becker

42. A Practical Question for Families “How do you want your loved one to die?”

43. And…A Point to Ponder for Physicians What is my goal in caring for patients? Is it facilitating the gaining of health? OR Am I engaged in a battle against death?