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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.

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Laura Mavity, MDClinical Director, St. Charles Advanced Illness Management

Paternalism vs. Autonomy: A Role for “Maternalism” in Clinical Communication

Objectives

• 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

AutonomyPaternalism

AUTONOMYPATERNALISM

Paternalism

American Heritage Dictionary Definition:

(p -tûr'n -lĭz' m) ə ə ən.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.

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.

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 beneficenceBreslow 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

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.

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

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.

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?”

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

“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”

Palliative PaternalismAn approach to Maladaptive Coping

Coping and Advanced Illness: Cognitive

Roland, Thornberry, Mitchell, Cain, Overdonk, AAHPM Annual Assembly 2013 “Redefining the Role of Paternalism in Palliative Care”

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”

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

Coping and Advanced Illness:Emotional/Psychological

Coping and Advanced Illness:Social/Cultural

Roland, Thornberry, Mitchell, Cain, Overdonk, AAHPM Annual Assembly 2013 “Redefining the Role of Paternalism in Palliative Care”

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

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.

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.

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.

“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

Becky

Dorothy

Aidan

Maternal

• Accessible and present

• Patient

• Kind, warm, affectionate

• Compassionate and empathetic

• Honest

• Coaching (supportive and directive)

• Permissive vs. boundaries

• Comfort with dissonance

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

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

What about “Medical Maternalism?”

Maternal

• Accessible and present

• Patient

• Kind, warm, affectionate

• Compassionate and empathetic

• Honest

• Coaching (supportive and directive)

• Permissive vs. boundaries

• Comfort with dissonance

Accessible/Present

• 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”

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

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

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

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

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

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

Comfort with Dissonance

Dissonance

1. lack of agreement; inconsistency between the beliefs one holds or between one's actions and one's beliefs

2. a mingling of discordant sounds; a clashing or unresolved musical interval or chord

Merriam-Webster Dictionary

Comfort with Dissonance

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.

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.

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

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.

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.

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.

Children Are Like KitesBy 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.