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In the Shadow of Hope

In the Shadow of Hope. Truth Telling in Oncology. Larry D. Cripe, M.D. Indiana University Melvin and Bren Simon Cancer Center. The Central Conversation Oncologist and the person with advanced cancer. The pivotal importance of prescriptive authority

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In the Shadow of Hope

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  1. In the Shadow of Hope Truth Telling in Oncology Larry D. Cripe, M.D. Indiana University Melvin and Bren Simon Cancer Center

  2. The Central ConversationOncologist and the person with advanced cancer • The pivotal importance of prescriptive authority • Knowledge of the implications of the diagnosis • Cultural norm

  3. Estimated Cancer Deaths1993 564,800 American Cancer Society

  4. Cancer care near the end of life

  5. Two critical goals of the central conversations in oncology • Disclosure of diagnosis • Disclosure of prognosis

  6. The central tension in conversations with the person with advanced cancer Deception Truth telling

  7. Physicians’ reported practice of disclosing the diagnosis of cancer evolved, in the United States, between 1960 and 1980

  8. Physicians’ attitudes to the disclosure of the diagnosis of cancer Oken (1961) JAMA 175:1120 Novak (1979) JAMA 241:897

  9. Origins of physicians’ attitudes to the disclosure of the diagnosis of cancer Oken (1961) JAMA 175:1120 Novak (1979) JAMA 241:897

  10. The evolution of physicians’ practice of disclosing the diagnosis of cancer • Legal and ethical expectations were articulated and applied to clinical encounters • The discovery and development of anti-cancer interventions

  11. Tuskegee Untreated Syphilis Study Natanson vs Kline Duff and Campbell NEJM Moral and Ethical Dilemmas in the Special Care Nursery National Commission Protection of Human Subjects Presidents Commission Ethical Problems in Medicine Quinlan Decision Beecher NEJM Ethics and Clinical Research Patient Bill of Rights First Heart Transplantation Non-disclosure of diagnosis Disclosure of diagnosis 1960 1980

  12. Clinical Research Ethics Evolution in physician - patient relationship The informed consent model of medical decision making Legal requirements of consent in clinical practice

  13. The informed consent model of medical decision-making • Withholding information deprived subjects of right of refusal or choice • Clinical research, technology of transplantation and ICU: “in the best interest of whom?” • An autonomous, respected and fully-informed individual was necessary

  14. The informed consent model of medical decision-making How well do oncologists do when the diagnosis is advanced cancer?

  15. Study of informed medical decision-making in people with advanced cancer • Possible goals of palliative chemotherapy • Relief of symptoms • Prolongation of life • Likelihood of achieving goals decreases with each recurrence, thus supportive care with transition to end of life care may be appropriate

  16. Study of informed medical decision-making in people with advanced cancer • Observational study of initial consultations between oncologists and patients with advanced cancer • Analysis of audiotapes with coding system devised to assess • Information provided • Estimates of prognosis • Presentation of treatment options • Encouragement to participate in decision-making J Clin Onc. 2002; 20:503-513

  17. Study of informed medical decision-making in people with advanced cancer Gattellari (2002) 20: 503 - 513

  18. Study of informed medical decision-making in people with advanced cancer Gattellari (2002) 20: 503 - 513

  19. Disclosure of informationInformation provided influences hopefulness Sardell Cancer (1993); 72:3353

  20. End of Life Care Conversations What if the precepts of informed consent / decision making are not relevant to the choices people make about care when life will likely end from advanced cancer?

  21. What do the people we care for value in communication? • Three qualitative studies of interest • Women with early stage breast cancer • People with esophageal cancer after esophagectomy • Patients enrolled on phase I trial J Clin Onc. 2002; 20:503-513

  22. What do women with breast cancer value? • Not communication skills such as • Provision of information • Provision of choice • Enduring characteristics were important • Demonstration of technical expertise • Formation of individual relationships • Demonstrated respect for the woman BMJ. 2004; Online

  23. What about people who underwent esophagectomy? • Cultural belief in surgical cure • Enhancement of trust in referral process • Idealization of the specialist surgeon • Belief in expertise rather than medical information • Resignation to the risks of treatment • Acceptance of the expert recommendation as consent J Thor Card Surg. 2000; 120:264-269

  24. Where does this leave us? Are the obligations of disclosure greater or less given that the decisions people make are not necessarily influenced by our ability to deliver information?

  25. Flaws of the informed consent model of medical decision-making • Refusal to provide consent is not the same as assenting to receive a medical intervention • It is based upon an ethic of disclosure of information that is insensitive to the expectations of the people who prescribe or the people who receive medical care, that is our hopes

  26. Why did the reported practice of physicians disclosing the diagnosis of cancer evolve, in the United States, between 1960 and 1980?

  27. “Your patient has no more right to all the truth you know than he has to all the medicine in your saddlebags…He should get only just as much as is good for him…It is a terrible thing to take away hope, every earthly hope, from a fellow creature.” Oliver Wendell Holmes Commencement Address 1871 Bellevue Medical School

  28. Physicians’ attitudes to the disclosure of the diagnosis of cancer (1960) • “The modal policy [was] to tell as little as possible in the most general terms consistent with maintaining cooperation in treatment.” • “…some family member must be informed…[to dissuade patient] from fruitless or unwise shifts to a new physician or (quack) only by cooperation of the informed relative.”

  29. Physicians’ attitudes to the disclosure of the diagnosis of cancer (1960) • “Every single physician interviewed…his resolute and determined purpose is to sustain and bolster the patient’s hope.” • “…and whether the expectation of death insurmountably deprives the patient of hope.” • “No one can be told without giving up and losing all hope.’”

  30. Non-disclosure of diagnosis Disclosure of diagnosis Adult ANLL: cure Adult AML: remission Pediatric ALL: remission Pediatric ALL: Cure Adjuvant chemotherapy Hodgkin Disease: cure Hodgkin Disease: remission Medical progress facilitated the disclosure of the diagnosis of cancer 1960 1980

  31. Physicians’ attitudes to the disclosure of the diagnosis of cancer (1980) • Physicians believe they can offer their cancer patients more hope • “…upsurge in interest in dying…a reduction in the fear that [dying] necessarily engenders a loss of hope…” • “…sweeping social changes…increasing public scrutiny…”

  32. Physicians’ attitudes to the disclosure of the diagnosis of cancer (1980) • “…patients who agree to participate in research protocols must be told their diagnosis to satisfy the legal requirements of informed consent.”

  33. What about the people we care for? • An interesting personal experience • The physician as patient: arrogance • Franz J. Inglefinger, M.D., 1977 • The trained observer as patient • Donald Cohodes, 1995

  34. Deception Truth telling Countervailing forces in truth telling Beneficence Prognostic uncertainty Hope Respect for autonomy Intrinsic good Informed consent

  35. Hope Deception Truth telling Informed consent Countervailing forces in truth telling

  36. Where do we go from here? • An informed participation model of medical decision making • Sharing the moral burden of the consequences of the medical decision

  37. Informed participation model • Explicit statement of recommendation and the reasons for recommendation • Explicit affirmation by the patient that adequate opportunity was provided to participate in the decision process • The document facilitates and memorializes the process

  38. Discursive properties of hope in advanced cancer

  39. Sharing the moral burden of the consequences of the decision • Avoidance of the implicit abandonment in medical intervention in advanced cancer • A willingness to discuss the undesirable outcome • resolute and determined purpose is to sustain hopefulness regardless of outcome

  40. “In a journey of compassion what we have ultimately as our guide is whatever understanding we may have gained along the way of ourselves and others, chiefly those close to us, so close to us that we have lived daily in their sufferings. From here on, then, in the blinding smoke it is no longer a “seeing world” but a “feeling world”--the pain of others and our compassion for them.” Young Men and A Fire --Norman MacClean

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