2014 PPE Disclosure Statement

1. 2014 PPEDisclosure Statement It is the policy of the Oregon Hospice Association to insure balance, independence, objectivity, and scientific rigor in all its educational programs. All faculty participating in any Oregon Hospice Association program is expected to disclose to the program audience any real or apparent affiliation(s) that may have a direct bearing on the subject matter of the continuing education program. This pertains to relationships with pharmaceutical companies, biomedical device manufacturers, or other corporations whose products or services are related to the subject matter of the presentation topic. The intent of this policy is not to prevent a speaker from making a presentation. It is merely intended that any relationships should be identified openly so that the listeners may form their own judgments about the presentation with the full disclosure of the facts. This presenter has no significant relationships with companies relevant to this presentation to disclose.

2. Paternalism vs. Autonomy: A Role for “Maternalism” in Clinical Communication • Laura Mavity, MD • Clinical Director, St. Charles Advanced Illness Management

3. Review concepts of Paternalism, Autonomy, and Beneficence in medicine Review concept of “Palliative Paternalism” Discuss the how events in our personal lives shape our professional work Discuss concept of “Maternalism” as a potential framework for effective, ethically balanced palliative care communication Objectives

4. PATERNALISM AUTONOMY Paternalism Autonomy

5. American Heritage Dictionary Definition: (pə-tûr'nə-lĭz'əm) n.A policy or practice of treating or governing people in a fatherly manner, especially by providing for their needs without giving them rights or responsibilities.paternalist pa·ter'nal·istadj. & n.paternalistic pa·ter'nal·is'ticadj.paternalistically pa·ter'nal·is'ti·cal·lyadv. Paternalism

6. … “Paternalism involves the interactions of two principles of medical ethics—beneficence and respect for autonomy.” Beneficence historically outweighed other principles in medical ethics 1970’s increased focus on autonomy in US Breslow L (2002). Gale Encyclopedia of Public Health. MacMillan Publishing. Beauchamp, T. L., and Childress, J. R. (1989). Principles of Biomedical Ethics. New York: Oxford UniversityPress. Veatch, R. M. (1989). Medical Ethics. Boston: Jones and Bartlett Publishers. Medical Paternalism

7. Beneficence vs. autonomy Medical paternalism -> beneficence takes precedence over respect for autonomy Professional = parent dealing with dependent, ignorant, fearful patient Taking away choice, imposing, ethically the opposite of autonomy High priority on beneficence Breslow L (2002). Gale Encyclopedia of Public Health. MacMillan Publishing. Beauchamp, T. L., and Childress, J. R. (1989). Principles of Biomedical Ethics. New York: Oxford UniversityPress. Veatch, R. M. (1989). Medical Ethics. Boston: Jones and Bartlett Publishers. Medical Paternalism

8. 69 yo male diagnosed with metastatic likely terminal cancer. Based on a long relationship, the man's physician knows that the patient has a history of psychiatric illness and is emotionally fragile. When the patient blurts out, "Am I OK? I don't have cancer, do I?" the physician answers, "You're as good as you were ten years ago," knowing that the response is a paternalistic lie, but also believing it justified in protecting the health and well-being of the patient. Medical Paternalism

9. Patient/surrogate preference takes precedent over other ethical principles Autonomy vs. beneficence Struggle ethically for clinician when patient is making a decision that the clinician believes is not in the patient’s best interest Autonomy

10. 69 yo male diagnosed with stage IIB non-small cell lung cancer. His physician fully informs him of all potential medical treatment options, including surgical resection, chemotherapy, radiation, with very reasonable chance for cure. Patient chooses no surgical intervention because he believes the treatments and surgery will impair his ability to go fishing for the next several months. The physician, concerned about beneficence, tries to advise the patient that these treatments may impair his ability to fish temporarily for some months, but that following treatments pt may be cured and be able to resume his fishing. However, the patient insists he will not pursue treatment so he can fish, and the physician respects those wishes. Autonomy

11. US Medical education 1990-2000’s Menu list of medical options Offered without medical advice or opinion Resuscitation discussions with patients “Would you like to have CPR and be intubated if your heart stops or you stop breathing?” “Would you like to have everything done if something happens to you while you are here in the hospital?” Autonomy at its worst…

12. Dr. J. Andrew Billings Dana Farber/ Harvard Cancer Center University of California, San Diego Palliative Care Team Roland, Thornberry, Mitchell, Cain, Overdonk Role for Paternalism in Palliative Care

13. Autonomy vs. Paternalism in palliative care communication Clinicians use of autonomy as an excuse to avoid making difficult medical decisions Open-ended questions and unlimited care options may cause more harm in selected high-risk patients “Palliative Paternalism” UCSD Palliative Care Team Roland, Thornberry, Mitchell, Cain, Overdonk, AAHPM Annual Assembly 2013 “Redefining the Role of Paternalism in Palliative Care”

14. Palliative Paternalism An approach to Maladaptive Coping

15. Coping and Advanced Illness: Cognitive Roland, Thornberry, Mitchell, Cain, Overdonk, AAHPM Annual Assembly 2013 “Redefining the Role of Paternalism in Palliative Care”

16. Coping and Advanced Illness:Emotional/Psychological Roland, Thornberry, Mitchell, Cain, Overdonk, AAHPM Annual Assembly 2013 “Redefining the Role of Paternalism in Palliative Care”

17. Coping and Advanced Illness:Social/Cultural Roland, Thornberry, Mitchell, Cain, Overdonk, AAHPM Annual Assembly 2013 “Redefining the Role of Paternalism in Palliative Care”

18. 59 yo advanced, treatment refractory ovarian cancer. She is hospitalized in ICU with bowel perforation and sepsis on pressor support and antibiotics. The oncologist and intensivist feel she will likely die within a few days. She is completely lucid, refuses to discuss any treatment limitations, despite all physicians involved in her care agreeing that her prognosis is limited to days and there are no additional treatment options, and she is not a surgical candidate. When the palliative care team is consulted and tries to discuss these issues with her, she refuses, asking to not to talk about anything negative because she needs to keep her hope, and she expects to continue live because there will be a miracle. Mrs. G

19. The palliative care team knows things need to be discussed with someone important to the patient and reach out to her sister. The palliative care team meets with the sister, makes her aware of patient’s impending death. The sister understands, agrees the patient should not be intubated, gathers family and friends. Patient is somewhat upset with the palliative care team speaking with her sister, but is able to say some goodbyes, quickly becomes more septic and unresponsive, with hypotension refractory to pressors, and dies comfortably in ICU without CPR or intubation. Mrs. G

20. Proposed as appropriate ethical balance between autonomy and paternalism Collaboration: Physician shares medical knowledge and opinion Patient shares values and preferences Jonsen, Siegler, Winslade. “Clinical Ethics.” 6th Ed, McGraw Hill, 2006. But there is still need for physician not to just offer menu of options, and physician opinion certainly can have a paternalistic angle. Shared Decision Making

21. Lenience  Fathers and mothers and people who are not parents to human offspring can have “maternal” qualities Men and women can certainly be maternal and paternal “Maternalism”

22. Becky

23. Dorothy

24. Aidan

25. Accessible and present Patient Kind, warm, affectionate Compassionate and empathetic Honest Coaching (supportive and directive) Permissive vs. boundaries Comfort with dissonance Maternal

26. Refers to the state of owning qualities traditionally deemed “motherly,” such as warmth, tenderness, and commitment to the protection and provision of children Latter 19th century in the United States (Progressive Era), “maternalism” began to take on sociopolitical connotations, so that the term came to denote a school of activism in which women, to fight for public causes, appealed to the qualities they believed were inherent to their gender As a result, maternalists were seen as women who take mothering outside the home and into their communities for the larger social good, nuturance and morality for society Encyclopedia of Gender and Society (2008). SAGE Publications Maternalism

27. Political movement pertaining to welfare-state development in late 1800s and early 1900s in United States, France, Germany, Great Britain Caring for welfare of children and mothers Nurturance and morality for society Social welfare systems, national funding for insurance against illness, accidents, disability, old age Integrated women from domestic sphere into public sphere Feminist activism and maternalism intertwined Political Maternalism

28. What about “Medical Maternalism?”

29. Accessible and present Patient Kind, warm, affectionate Compassionate and empathetic Honest Coaching (supportive and directive) Permissive vs. boundaries Comfort with dissonance Maternal

30. Accessible for meetings with patients and loved ones at the right time Present attention, focus, listening Engage with patients and families wherever they are at in their process, not afraid to delve into their issues, to get “dirty” Accessible/Present

31. Build rapport Allow adequate time for patient/family to come to their decision Allow the clinical scenario to develop Patient’s body may make decision Right timing to broach difficult discussions about prognosis, potential outcomes Patient

32. Respond to patient emotions with clear empathy Attentive Supportive Physical contact, use of appropriate touch Touch shoulder or hand, hug when appropriate Gentle approach to examination of patients Cool washcloth, warm blanket Kind, warm, affectionate

33. Being able to put yourself in their shoes Comfort with showing empathy Verbal responses Listening and being present Letting patients and families know you care Compassionate and empathetic

34. Sharing difficult information with gentleness and compassion Best case scenario Worst case scenario Prognosis Not too specific Unpredictable things can happen Consistency of information shared Honest

35. Coaching/encouraging Best cheerleader “I hope that happens too.” Directing toward sound, reasonable, realistic choices, but allowing intact sense of independence/autonomy Benefits or lack thereof for treatment options Wisdom to provide good advice from prior experience Coaching (Supportive and Directive)

36. Allow mistakes, bad decisions Autonomy Toddler vs. teenager vs. adult Palliative Paternalism Good professional boundaries What you can fix and what you cannot Permissive vs. Boundaries

37. Dissonance lack of agreement; inconsistency between the beliefs one holds or between one's actions and one's beliefs a mingling of discordant sounds; a clashing or unresolved musical interval or chord Merriam-Webster Dictionary Comfort with Dissonance

38. Comfort with Dissonance

39. “Conflict and chaos are prevalent in health care, and perhaps especially in palliative care. Typically, our point of entry into our patients’ lives is often at the moment of conflict, discord, or intense suffering. Despite this, little in our formal training as clinicians teaches us how to be present for this suffering. Much has been written about the process of communication with regard to giving bad news, handling family meeting conflicts, and negotiating shifting goals of care, but little has been addressed about how to train the clinician to be present with the dissonance and suffering… In turn, lessons on how to learn to lean into the dissonance of many palliative care encounters are extrapolated. “ “Turning Toward Dissonance: Lessons from Art, Music, and Literature” S. K.E. Makowski, MD, and R. M. Epstein, MD. J Pain Symptom Management, 2012;43:293e298. Comfort with Dissonance

40. “By exploring the possibility of being present in conflict without the need to assure resolution but rather with a curiosity for and willingness to ‘‘show up,’’ she created the opportunity for healing. This practice is not merely a cognitive or behavioral act but an artistic mastery that demands patience, attention, and curiosity. It asks the clinician to challenge the natural instinct of turning away from suffering, discord, and tension and instead to explore its nuances, its possibilities, and how it may unfold. In this manner, by practicing beauty, the novice can grow into an experienced, compassionate, and effective clinician.” “Turning Toward Dissonance: Lessons from Art, Music, and Literature” S. K.E. Makowski, MD, and R. M. Epstein, MD. J Pain Symptom Management, 2012;43:293e298. Comfort with Dissonance

41. “Paternalism” in medicine has a bad rap “Maternalism” as new language to describe an approach to communication very appropriate for palliative care Perfect ethical balance between autonomy and beneficence Maternalistic Communication in Palliative Care

42. 59 yo advanced, treatment refractory ovarian cancer. She is hospitalized in ICU with bowel perforation and sepsis on pressor support and antibiotics. The oncologist and intensivist feel she will likely die within a few days. She is completely lucid, refuses to discuss any treatment limitations, despite all physicians involved in her care agreeing that her prognosis is limited to days and there are no additional treatment options, and she is not a surgical candidate. When the palliative care team is consulted and tries to discuss these issues with her, she refuses, asking to not to talk about anything negative because she needs to keep her hope, and she expects to continue live because there will be a miracle. Mrs. G

43. The palliative care team honors patient wishes to not discuss negative things, but asks if she will defer to someone else to discuss her status and prognosis. She agrees to allow them to talk with her sister. The palliative care team meets with sister, makes her aware of patient’s impending death. The sister understands, gathers family and friends. The patient becomes more willing to engage with discussions as loved ones gather and she wants to know what is going on. Mrs. G

44. The palliative care team honors her continuing to hope for a miracle, but lets her know her prognosis is days, barring that miracle, and recommends addressing any closure she needs as soon as possible. They instruct her that intubation and mechanical ventilation are unlikely to provide any benefit at all to her with her condition. Patient says goodbyes, quickly becomes more septic and unresponsive with hypotension refractory to pressors, and she dies comfortably in ICU without CPR or intubation. Mrs. G

45. Children Are Like Kites By Erma Bombeck You spend a lifetime trying to get them off the ground. You run with them until you are both breathless. They crash. They hit the rooftop. You patch and comfort, adjust and teach, and assure them that someday they will fly. Finally, they are airborne. They need more string, and you keep letting it out. They tug, and with each twist of the twine, there is sadness that goes with the joy. The kite becomes more distant, and you know it won't be long before that beautiful creature will snap the lifeline that binds you together and will soar as it was meant to soar, free and alone. Only then do you know that you have done your job.