The Science and Art of Prognostication

1. The Science and Art of Prognostication Maggie O’Connor, M.D. Palliative Care

2. Disclosures • There are no conflicts of interest or relevant financial interests that have been disclosed by this presenter or the rest of the planners or presenters of this activity that apply to this learning session.

3. Objectives • Describe the importance of prognostication and the challenges to doing it well. • Understand the concept of evidence based prognosis, as well as its usefulness and limitations.

4. Map • Define prognosis • What makes prognosis is important • Challenges and benefits • What makes prognostication so hard • What do we do

5. Prognosis Defined • “Occurrence relations” between predictors & outcomes in (people) with diseases • Predictors • Environment: socio-economic standards, health care access & quality, climate • Host: demographic, behavioral, psychosocial, premorbid biologic • Disease: pathophysiologic, genomic, • Accumulated clinical information • Strength of evidence that a particular factor is causal • Outcomes • Fatal events: by cause and suddenness • Nonfatal events: relapse, infarction, repeated events • Patient centered ‘events’: symptoms, functional status, quality of life • Wider burden: on family&/or society

6. Foreseeing • Acute illness/injury • Terminal illness • Chronic illness • Prognosis becomes a search for risk factors of adverse outcomes

7. Challenge of Chronic Disease (Not a Modern Day Dilemma) • ‘‘Diseases of the heart are eminently difficult to form predictions on. A good deal of experience - more lengthened observation - is wanted on the subject. But it is my duty to tell you that death in this disease is often sudden. At the same time, no such results can be predicted. Your condition may be consistent with a tolerably comfortable life for another 15 years or more.’’ • Dr. Lydgate (by George Elliott 1872) • The patient died within weeks

8. Foretelling

9. Why is prognosis important? • Techno-death: changing beliefs about a good death • Internet: open access to information • Avoiding prognostication: unintended consequences • Benefits: of prognostication

10. Techno-Death • Death is becoming more and more • Professionalized • Institutionalized • Mechanized • Secularized • Dehumanized • Christakis, in Must We Suffer Our Way to Death? Cultural and Theological Perspectives on Death by Choice,edR.P. Hamel and E.R. DuBose, 15-44. Dallas: Southern Methodist University Press, 1996

11. Definition of “good death” is changing • In past ‘I want to die in my sleep’ • Increasingly “death as a private, individual, and personal event…. painless, at home, & surrounded by loved ones” • “fear of a loss of control, a loss that is antithetical to a core American value” • “Such a death is managed, and thus must be predicted.” NC 27

12. Dr. Internet • More (ALS) patients (68%) sought medical info from internet than from their doctors (52%) • First 30 results for web search ‘life expectancy ALS’ • Information on life expectancy blunt and untailored to individual phenotype • 19 (63%) offered estimate visible in summary lines • 24-60 months (53%) • “may have a normal life-span” (one site) • “Avoid the internet” not helpful or followed • Children may be searching for an explanation for a parent’s symptoms soon after onset, often without their parent’s knowledge, and sometimes at a young age. • ZhongboChen, Martin R Turner, AmyotrophLateral Scler. 2010 Dec; 11(6): 565–567.

13. Unintended consequences • “When prognosis is avoided, treatment is encouraged” NC 106 • Physicians underestimate survival rate in medically managed patients with CAD, overestimate the benefits of bypass surgery & recommend inappropriate revascularization. • J. Kellett,European Journal of Internal Medicine 19 (2008) 155–164

14. Benefits for patients and families • Empowered to make hard choices • Avoid inappropriate or needlessly painful treatments • Conversely not be denied appropriate treatments • Time for needed conversations • Support for not delaying plans and missing opportunities • Evidence may coincide with their own gut feeling • feel less crazy • Support for letting go

15. Benefits for providers • “(Help health care workers) distinguish things they might control from things they cannot, and …mitigate the stress associated with their role.” • Avoid treatment of “patients prone to unfavorable outcomes altogether.” NC 105

16. Societal benefits • Wise use of health care dollars • Well-being of survivors • A death that is anticipated, planned for is more likely to be a “good death” • One life-task of the dying person is easing, possibly reducing, the fear of dying for survivors

17. What makes prognostication hard? • Inadequate training • scarce research • Inherent error • Fear of altering outcomes • Professional disapproval • Role conflict • Professional norms • Vulnerability • The problem of death

18. What makes prognostication hard? • Inadequate training & research

19. Graduate Study • A couple years ago only graduate programs mentioning prognostication: MBA, MPh • Funding by and large directed at interventional studies • Geriatric/Palliative care fellowships • Beginning to provide resources in training and online • https://palliative.stanford.edu/prognostication/

20. Textbooks • “Books for laypersons… offer more substantial guidance on what to expect while dying than medical textbooks.” • Carron AT et al, Ann Intern Med, 1999, 130:82-86 • Glare P, Christakis N, eds., Prognosis in Advanced Cancer Oxford: Oxford Press, 2006.

21. What makes prognostication hard? • Inherent error

22. Inherent error in prognostication for individual patient • Multiple studies • substantial error in prognosis • over-optimistic • experienced physicians are better • worse if patient well-known to physician

23. Inherent error in prognostication for individual patient • Chronic disease even more difficult because not only is the course of illness lengthy, unpredictable • Prognosis often depends on patient behavior • Bacon… • Sudden death –highly prevalent and highly unpredictable

24. MD intuition can be accurate • Surgeons’ ‘gut feeling’ after surgery • Good predictor of eventual outcome • APACHE – good at predicting immediate death • Critical care MDs better at predicting who is likely to die during hospitalization • Assessment of severity involves prognositication • Who should be admitted • Physicians amazingly accurate in this regard • Charlson ME, et al. Assessing illness severity: does clinical judgementwork? J Chron Dis 1986;39:439–52.

25. What makes prognostication hard? • Fear of altering outcomes

26. Beliefs about outcomes • Predicting an outcome alone is as effective as treatment in causing the outcome • No evidence, only embedded belief • Physicians fear negative predictions because • They might not work as hard on patient • Other staff behavior affected • Prediction “becomes the cause of death” NC 144 • Nicholas Christakis, Death Foretold: Prophecy and Prognosis in Medical Care, The University of Chicago Press, Chicago & London, 1999.

27. “I don’t want to take away hope” • “Physicians tend to regard hope as something the doctor can give to the patient that the patient might lack” NC 133 • The doctor is the giver and the patient the receiver • Reality is viewed as the antithesis of hope and the precursor of fear. NC 134

28. Discussions of Prognosis • Increased satisfaction and decreased depression and anxiety • +/- regarding hope • Increases hope • Willingness to answer questions and give information • Offer the most up to date information about treatment • Provide emotional support • Decreases hope • Poor communication • Pessimistic attitude • Impersonal context for disclosure

29. Even grim prognosis can foster hope • Greater fear when no discussion of grim prognosis • “No news is bad news” • Physicians give least honest answers to those with worst prognosis • Patients who reported having EOL discussions • No higher rates of depression or worry • Bereaved caregivers • More depression following more aggressive care • Wright AA et al, (2008) JAMA 300; 1665-73

30. What makes prognostication hard? • Professional disapproval

31. “I think a readiness to prognosticate displaysarrogancerather than wisdom” • “Making hard predictions is bad practice for both physicians and patients.” • “Prognosis is dirty business.” • “The only thing that is ever true about the prediction is that it is wrong.” • “Prognosis is often an ego trip by the physician that patients should not have to suffer or pay for.” • Prognosis is the province of “God alone.” • NC 92-93 (anon MDs)

32. What makes prognostication hard? • Role conflict

33. Physician role conflicts • Do everything possible, and avoid futile treatment • Act with dispatch, and prudence • Be objective, and empathic • Treat with respect, and “beneficently” • Prognosis should convey, “optimism, honesty, accuracy, realism, hopefulness, humility and foresight all at once” NC 91

34. What makes prognostication hard? • Professional norms

35. Socialization • “I heard about this patient, his doc told him that he would die in 6 months… he’s still with us but his doctor died the next month….”

36. Socialization • Power must be restrained and linked to responsibility, but… • Power of prognosticating is restrained in a self-serving and self-protective way… • …by limiting physicians’ contact not only with prognosis, but with death and adversity. NC 106

37. Professional norms re prognosis • Do not make predictions • This is hubristic and unethical • Keep what predictions you do make to yourself • Do not communicate predictions to patients unless asked • Do not be specific • days to weeks… • Do not be extreme • Be optimistic (don’t take away hope) NC 92

38. What makes prognostication hard? • Vulnerability

39. Vulnerability • “…what I really need is a Vulnerability Anonymous meeting—a gathering place for people who like to numb the feelings that come with • not having control, • swimming in uncertainty, or • cringing from emotional exposure.” • Brown, B. Rising Strong The Reckoning. The Rumble. The Revolution, Spiegel & Grau, NY: 2015. (241)

40. Medicine has the “frightening and awesome power… both to keep a nearly dead patient alive and to make a previously well patient nearly dead.” NC 149 • Foreseeing is a burden, foretelling is an existential crisis

41. What makes prognostication hard? The problem of death

42. Denial of death • “Perhaps the whole root of our trouble, the human trouble, is that we will sacrifice all the beauty of our lives, will imprison ourselves in totems, taboos, crosses, blood sacrifices, steeples, mosques, races, armies, flags, nations, in order to deny the fact of death.” • James Baldwin, The Fire Next Time (New York: Vintage Books, 1993; 91. (First published 1962.)

43. Denial of death • Ernest Becker, cultural anthropologist: the “natural and inevitable urge to deny mortality and achieve a heroic self-image are the root causes of human evil.” • Escape from Evil (New York: Free Press, 1975), xvii. • Physicians describe making a prediction (regarding a person’s death) as being ‘like handling a bomb’ NC 158

44. Maintaining denial • “This emphasis on being active is so strongly a part of the American medical ethos that it appears even in circumstances in which it might seem superfluous” • “encouraging terminally ill patients to get out of bed or ‘do something.’” NC 141 • Or try to eat more, get stronger before trying more treatment….

45. Spiritual, existential, God…in a secular world • “The “God” that physicians sometimes invoke when discussing prognosis is not just a metaphor for the limits of a physicians’ ability… it is… a belief in a power that is beyond physicians’ understanding.” • “I’m not a very spiritual person, but when I think about medical outcomes that I’m not sure I know 100 percent why they occur, I think about God.” • NC 82

46. Existential/spiritual crisis • Death is transcendent, unrealizable in human experience, cognition or thought • “The act of prognostication cannot avoid highlighting the ineradicably nonsecular nature of healing.” NC161

47. Existential/spiritual meaning • “…(spirituality) gives meaning both to the patient’s suffering and to the physician’s limitations…. • The emergence of (spiritual) sentiments reflects the extent to which physicians, in prognostication, cannot escape the prophetic role, (which) seeks to find grace in suffering, order in disorder and meaning in disease.” NC 83

48. So what do we do?

49. When discuss? • Express willingness to discuss prognosis with all PC patients and families if you are well informed • Discuss or revisit when • a patient raises the topic • needs to know OR seems ready to know • Prognostication Project

50. When discuss? • New diagnosis • Major medical decisions with uncertain outcome • Patient or family ask • Patient asking for treatments that are inconsistent with good clinical judgment • Would you be surprised? then ask, would the patient be surprised? if these don’t match, a discussion is needed • Patient is actively dying (!)