When fear undermines autonomy

The American bioethics movement champions the ideal of patient autonomy as an antidote to decades of unwarranted medical paternalism.

But fear and anxiety can interfere profoundly with a patient’s ability to deliberate—and medical teams lack a model for how to assess such cases.

Dr. Jodi Halpern, a professor of bioethics and medical humanities in the UC Berkeley-UCSF Joint Medical Program, is working to change that.

A paper by Dr. Halpern In the May 31 issue of the Journal of Evaluation in Clinical Practice, draws on years of study to outline the emotions that undermine a person’s ability to deliberate, which is the basis of the capacity of autonomy. She also presents a theoretical and clinical model for a more appropriate and nuanced approach to acting responsibly toward patients experiencing such emotional roadblocks.

“Patients frequently experience serious losses and threats that can catalyze extreme fear, despair, and catastrophic thinking,” Dr. Halpern writes. “These psychological states can distort and even undermine people’s decision-making just when they are facing crucial decisions about their lives.”

If the medical team does not recognize that a patient’s emotional state has shut down their ability to see a livable future, Dr. Halpern writes, the team loses the opportunity to help the patient regain the capacity to act autonomously and value their own lives.

Halpern’s paper presents the real cases of two women in their 50s, one of whom had a lasting impact on Halpern’s own career. Ms. G., as she is identified, was a woman in her early 50s with diabetes who came to the hospital where Halpern was a trainee for a second above-the-knee amputation.

At first, Halpern writes, Ms. G. seemed accepting of the life changes that her surgery would bring. She prepared her home for wheelchair use, and was in a good state of mind. Immediately after the amputation, however, Ms. G.’s husband told her that he had fallen in love with someone else, and was leaving.

After that conversation, Ms. G.’s pain became unmanageable, even with morphine. She then refused dialysis, without which she would die in a matter of days.

“She stopped speaking to anyone, including her close women friends, whom she banished outside her hospital room,” Halpern writes. “When the ethics consultant met with her and asked her for her reasons for refusing treatment, she told him that while she understood that she would die without dialysis, she did not want to live a life in which she was certain she would always be alone and feel terribly rejected.”

“She no longer felt able to adjust to using a wheelchair and to face future complications of diabetes. She refused to wait and think about it.”

Ms. G.’s medical team not only assumed that her decision-making capacity was intact, but, Halpern recalls, they also unconsciously devalued her future as a disabled woman living alone, telling Halpern, “Wouldn’t you want to die if you were her?” To Halpern, they were unconscious of their own emotional reactions and biases and felt that they were simply respecting her decision when they turned up the morphine, with Ms. G. dying soon after.  Halpern, then a trainee, could do nothing.

“It was horrible. So devastating,” Halpern said in an interview. “She told me to leave the room, and I felt like I had to respect her request and go talk to the attending doctors. Now, I wish I had stayed, and let her express her anger directly to me.”

What Ms. G. needed, Halpern said, was empathic listening to help her recognize that her belief that her future was certain to be terrible was an expression of her current state of emotional crisis catalyzed by her husband’s abandoning her.

“I would have pushed for more conversations with her despite her asking to be left alone to die, even though this is a form of maternalism. It was essential to buy some time for her to recover emotionally to actually act autonomously on her own long-standing values.”

“You have to train doctors to pay attention to their own emotional biases and listen with genuine empathic curiosity to patients. We have to change the healthcare system. It’s very hard.”

But, she added, all the training in the world doesn’t help if you don’t have enough time. “Doctors have to process their emotions and take care of themselves too. It would certainly humanize health care and research.”

Much of Halpern’s career has been focused on the role of unconscious emotional communication, biases, and failures in medical care. Her 2001 book, From Detached Concern to Empathy: Humanizing Medical Practice, was called the seminal work on empathy in medicine by JAMA. Her novel model of empathic curiosity, in which doctors recognize that they do not know what patients feel and must listen to patients with genuine curiosity, has influenced medical education internationally.

Inspired to help patients like Ms. G., Halpern conducted a long term study of people with health losses who predict catastrophic futures to see how they actually adapt to their condition. This led to her current book project, Remaking the Self in the Wake of Illness, for which she won the 2022 Guggenheim Award in Health and Medicine.

With this paper, Halpern calls for health care teams to intervene to help patients to recognize that their capacity to deliberate is blocked, and that they need help to think beyond their emotion-dictated view.

“The person need only recognize the limitations of her own mental state to become genuinely free to seek help in making a critical decision about her future,” she concludes.