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

3. Objectives Review concept of “Palliative Paternalism”
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
Disclaimers
I am not an ethicist
Different kind of talk for me

4. PATERNALISM AUTONOMY Paternalism Autonomy
Review the ethical priniciples of paternalism and autonomy with what seems to me like large pendulum swings over the years.
Paternalism
Autonomy

5. Paternalism 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·ist adj. & n. paternalistic pa·ter'nal·is'tic adj. paternalistically pa·ter'nal·is'ti·cal·ly adv.
Paternalism is defined as

6. Medical Paternalism
… “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.
-Historically, beneficence has long retained primacy in medical ethics, and physicians were able to rely almost exclusively on their own judgement about their patients' needs for treatment, information, and consultation. However, medicine has increasingly been confronted—especially since around 1970—with a different kind of need, namely the patient's asserted need to make an independent judgment.

7. Medical Paternalism
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.
-The central problem in these discussions is whether the principle of respect for autonomy, which gives primary decision-making authority to patients, should have priority in medical practice over the principle of beneficence, which gives authority to providers to implement sound principles of health care. Resolving this issue requires coming to terms with the problem of paternalism. Medical paternalism poses significant ethical questions because it holds that beneficence can legitimately take precedence over respect for autonomy. From this perspective, a paternalistic approach justifies that a professional is like a parent dealing with dependent, ignorant, fearful patients.
-Many leading ethicists maintain that paternalistic interventions are seldom justified, because the right of the patient to act autonomously almost always outweighs obligations of beneficence toward the autonomous patient. In the practical world, it is important to seek a balance between the demands of both beneficence and respect for autonomy. It is useful to note that this balance may be seen differently in non-American cultures, where there may be a stronger tilt toward beneficence and less on autonomy.

8. Medical Paternalism
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.
This is a case that exemplifies medical paternalism.

9. Autonomy
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

10. Autonomy
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.
This is a case that exemplifies autonomy.

11. Autonomy at its worst… 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?”

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

13. “Palliative Paternalism” UCSD Palliative Care Team
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
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
They propose a way to distinguish between patient’s who would benefit from a more autonomous vs paternalistic approach to communication in 3 realms:
Cognitive, emotional/psychological, social/cultural

15. Coping and Advanced Illness: Cognitive
Adaptive Coping
Maladaptive Coping
Bright, ability to compare and contrast two or more complex ideas
Articulate
Problem solvers
Cognitively delayed, inability to consider two opposing options at the same time, unable to conceptualize possible outcomes
Medically naïve, view human body similar to a car, discrete parts that work together but no interaction
Extremes of age, young or old (dementia)
Roland, Thornberry, Mitchell, Cain, Overdonk, AAHPM Annual Assembly 2013 “Redefining the Role of Paternalism in Palliative Care”

16. Coping and Advanced Illness: Emotional/Psychological
Adaptive Coping
Maladaptive Coping
Capacity for self-awareness
History of utilizing strategies to maintain emotional equilibrium
Problem solvers
Emotionally arrested or reactive
Shame prominent emotion, inaccurate belief it is his/her fault patient is ill
PTSD
Serious mental illness
Magical thinking
Need to assert own authority in spite of harm to self
Substance abuse
Roland, Thornberry, Mitchell, Cain, Overdonk, AAHPM Annual Assembly 2013 “Redefining the Role of Paternalism in Palliative Care”

17. Coping and Advanced Illness: Social/Cultural
Adaptive Coping
Maladaptive Coping
Value autonomy
Good support system
Utilize direct and open communication
Cultures traditionally mistrustful of the medical community
Belief that only option is a miracle
Cultures focused on the collective rather than the individual
Cultures that value deference to authority
Roland, Thornberry, Mitchell, Cain, Overdonk, AAHPM Annual Assembly 2013 “Redefining the Role of Paternalism in Palliative Care”

18. Mrs. G
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.
This case is an example of a more paternalistic approach to communicating with a patient with maladaptive coping.

19. Mrs. G
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.

20. Shared Decision Making
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.

21. “Maternalism” 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
I want to talk about maternalism as a concept and how it could apply to patient care and communication in the palliative care arena.

22. Becky
-mother was a nurse BSN. Married and pregnant during nursing school. Never worked really as a nurse. Her career was as a mother to two children, busy with moving every 3-5 years due to my dad’s work and maintaining a household with a much beloved husband who was away traveling for work about 1/3-1/2 of his time
-very close to my mother who was very involved in our day to day lives
-I am first doctor in my family – my mother was very proud
-diagnosed with stage IV colon CA with liver metastases my first month of medical school
-met one oncologist “get your affairs in order”
-sought second opinion, embarked on chemotx regimen, experimental protocols
-fairly good QOL for much of the next 2.5 years
-plan to take leave from school and care for her
-very rapid decline near end of her life with malignant pleural effusion, anemia, ambulatory and independent to bed bound in 3d, terminal agitation
-on hospice 5d prior to death
-Dad called, said 2 weeks prognosis, so finished by 3rd year OB/GYN rotation
-died at home, not really sure how comfortably, Dad and sister providing care, exhausted, I came home less than 24h prior to her death, lying on mattress giving liquid morphine, HHA skin breakdown but moaning when turning, labored breathing
-spent two weeks at my parents house sobbing, Dad and sister went back to work, Dad told me to go back to school, peds psych rotation
-4th year rotations at Stanford to be near my father, IM residency in Portland
-hard time with people getting upset about their 90 yo mother dying
-moved on to IM residency and then practice
-lack of discomfort with dying, my first death I ever attended was my mother’s

23. Dorothy
-met Dorothy in my first two years of practice out of internal medicine residency
-not her PCP, but cared for her multiple hospital admissions, got to know each other
-single lady, very close friend network, no biologically related involved family, no children
-PhD in Home Economics from Mighican State my alma mater
-recurrent hospitalizations: CHF, MDS transfusion dependent, recurrent cellulitis of legs
-last hospitalization came in for cellulitis again, tipping into sepsis with falling BP
-resuscitated in ER and well enough to be clear mentally
-looked me in the eye and asked me if she had to be treated for this infection, very poor QOL, had liked to live alone now could not, sick of returning to hospital, declining health and independence
-”No, I guess not”. I stopped abx, stopped IVF, stopped all heart meds, and ordered her as needed morphine
-stayed in the hospital, died 2 d later very comfortably
-her friend reached me later and gave me this special bowl Dorothy had set aside for me with huge thanks to honor her wishes
-this was the AHA moment, the understanding of providing medical care to patients on their terms, not mine, after offering all their options
-led to my applying for fellowship in palliative medicine

24. Aidan
-pregnant just before starting palliative medicine fellowship, spent bulk of it pregnant, and the rest as a new mother
-first rotation back from maternity leave peds rotation
-baby w leukemia story
-still have hard time taking care of peds cases, young mothers

25. Maternal Accessible and present Patient Kind, warm, affectionate
Compassionate and empathetic
Honest
Coaching (supportive and directive)
Permissive vs. boundaries
Comfort with dissonance
So you can see thoughts about mothers, mothering, and maternalist have been heavily Think about someone in your life that fits the image of maternal for you – this may very well be a male in your life!
My definition of maternal has these traits.
I want to spend some time talking about more formal definitions of maternalism in these next slides.

26. Maternalism
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

27. Political Maternalism
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

28. What about “Medical Maternalism?”

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

30. Accessible/Present Accessible Present
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”
Analogy of engaging physically in a maternal way: not afraid to get into the midst of things and getting a little dirty, whether with changing diapers, getting covered with vomit when a gastroenteritis hits the house, getting covered with dirt when someone back from crashing on their blue banana bike that didn’t ride as the best dirt bike

31. Patient
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
Being patient speaks to me so much as a maternal trait, recalling how my mother didn’t choke me when I was 5 years old and drew a big black spider covering the entire light yellow carpet she had just put into my bedroom or how I thought it would be a good idea to write the days of the week on the knobs of my closet she had just painted

32. Kind, warm, affectionate
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

33. Compassionate and empathetic
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
Remembering when your heart was broken, struggling through puberty, having lived through those things before seems to allow you to be more empathetic

34. Honest 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

35. Coaching (Supportive and Directive)
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
My mom was my kindergarten soccer coach even though she never even played soccer, and our best cheerleader at the sidelines when we played sports.
Good coach is supportive yet directive

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

37. Comfort with 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
Being able to tolerate the chaos of noise
Dad back from traveling could never tolerate the chaos of the noise of children running around, the dissonance and clash of sounds which was a normal part of my mother’s days

38. Comfort with Dissonance

39. Comfort with Dissonance
“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.
One of my favorite colleagues and friends Dr. Richard Maunder brought this article in to our team journal club and this really struck me.
I want to read a few lines about dissonance from this article for you.

40. Comfort with Dissonance
“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.

41. Maternalistic Communication in Palliative Care
“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

42. Mrs. G
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.
Remember that case of Mrs. G
Here it is with a more maternalistic communication approach

43. Mrs. G
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.

44. Mrs. G
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.

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.