Editor’s note: This blog post is the first part of a two-part series. Read part two.
I can’t remember why we were in an emergency department, although the visit invariably had something to do with Mom’s health decline. With every basic question the triage nurse asked, my mom looked at me confusingly, hoping I could somehow rescue her from her state of unknowingness. After a few attempts at eliciting meaningful responses, the triage nurse physically shifted away from Mom and began engaging with only me.
Mom entirely disengaged from our conversation. She was trying to wipe a stain off her shirt, an effort to retain a small sense of dignity under the hollow of the florescent lights. When the nurse left the room, Mom whispered, “losing your memory sucks.”
I did not respond. Here I was, a clinical ethicist who had conducted literally thousands of ethics consultations in tertiary and community hospitals, an ethicist who worked with innumerable patients and families after devastating neurological injuries, and I had no response for her.
I study patient-clinician communication and medical decision making, yet I could not adhere to my own advice of finding ways to include her in clinician-patient conversation.
It was somewhere in this visit that I realized that the ethics knowledge I had gained (and dutifully taught medical students and other healthcare professionals) could sometimes be divorced from everyday life.
I wondered whether we might unintentionally introduce harms to patients, families, and clinicians by making a “right thing to do” sound simple and attainable. Many times clinicians brought me into challenging, seemingly intractable cases for the purposes of mediating, identifying appropriate courses of action, and helping clinicians and families move towards a supportable course of action.
In those cases, I recognized that the “right” course of action may not always be the right answer for a particular patient or family. Maybe the textbook ethics response sometimes gets it wrong, or not entirely right.
Consider the following example of where ethics may not get it fully right. Mom was brilliant back in the day. Valedictorian. Mensa. National Merit Scholar. 4.0 GPA. She never knew anything short of an “A.” To say that she put emphasis on her intellect would be an understatement. Had I asked her 10 years ago (when she was well) what she values most in life, she would unequivocally say her intellect and meaningful interaction.
If I were to ask her what condition would make continued aggressive measures a life that would be unacceptable to her, she would undoubtedly say that any compromise in her mental state.
Yet paradoxically, she also finds her present state of life and compromised mental state to be entirely acceptable–frustrating, no doubt, but acceptable. After all, as she frequently says, humans are “resilient, brave, and strong, and they learn to adapt.”
Have her values changed? I don’t think so. Even now, as the progression of time etches away at her memory reserve, she says she values what intellect she has left. Have her preferences changed? No. Instead, she says, her values and preferences, as expressed 10 years ago, were not fully informed.
Had I acted upon her “incomplete” values and preferences and made decisions on her behalf that put primacy on her intellectual ability without recognizing the additional layers and complexities behind her emphasis on intellect — then I might have made “wrong” decisions.
Time and again, we, as healthcare professionals, ask patients and family members to make life-or-death decisions, failing to recognize that their decisions are impacted by grief, stress, exhaustion, struggle, tension, and the balancing of competing obligations. We expect them to hear precise clinical language that clinicians may or may not have actually provided.
We expect patients and family members to comprehend intricate details. We expect them to sort through the various contingencies and possible courses of action, which are laden with uncertainties and unknowns.
Through all of this, we expect them to make “good” decisions reflect patients’ preferences while failing to recognize that patients’ preferences are more complicated than simple value expressions.
When I became a caregiver, these issues came into clear focus. As I continue to care for my mom, I have considered how these lessons can inform my clinical ethics practice. In what follows, I provide some recommendations for clinicians and other healthcare professionals on how we might do better in our communications with and care for patients’ families, recognizing impacts that stress, grief, and burden have on caregivers’ decision-making abilities.