Balancing emotions and reason at the end of life

Before you can even form a thought, emotions are influencing your judgments.
-Zimmerman and Lerner

It’s 9am on a Monday, and our palliative care team circles a table to prepare for the workday. Before us is a list of names, each representing a patient and his or her needs, support system and care team. Many are referred to us because they are suffering — be it pain, agitation, emotional distress, existential crisis or decisional ambivalence. The suffering is directed to our team with two common requests for help: symptom support or goals of care.

A request to address goals of care implies uncertainty about the benefits “routine” medical care can offer. Someone in the circle of care, be it a doctor, a nurse, mid-level provider, a social worker, patient or the patient’s family member, questions: “Is this path the right direction? Is this care helping or creating more suffering?”

This reflective moment often spurs a palliative care consult. We seek to understand each patient and their support system, identify needs and discover options to share with the patient, family and the medical team. Our contribution to routine hospital care can be eye-opening — new or atypical paths are revealed, like flying a patient to see loved ones in another country or performing a wedding ceremony in a hospital room. These experiences can revive a humanity that serious illness robs from patients and families.

Other times our work is less dramatic. Instead of revealing paths, we bear witness to incomprehensible events and a myriad of difficult decisions faced by patients and families, especially related to end-of-life care. Years of this work helped me recognize the interplay of the emotional and rational intellect inherent in all decision-making.

When patients or families receive a poor prognosis, some quickly reconcile their rational and emotional intellect and seek a path to maximize the quality of time left. Others challenge the facts presented and are proven correct, but more often soon realize that the facts are accurate and it’s time to focus on end-of-life care.

However, there also exists a small cohort of patients or families that can’t resolve the tension between their rational and emotional intellects. They logically understand a patient’s illnesses should lead to a dying process, but their emotional intellect won’t let them believe it. Their minds race with thoughts of miracles, hope, just a little more time, just a little more fight, it just can’t be — and with feelings of fear, sadness and hopelessness.

This conflict between the emotional and rational intellect can lead to patient care decisions that fail to “make sense” to an outside observer.  However, it surprises me to think that our health systems present patients, or more often their families, with very complex decisions — should we try CPR, or life support, or stop these medical therapies — at a time when their emotions are in overdrive and their rational intellect is just trying to catch up. As providers we struggle when the responses to these questions fail to recognize a patient is dying, fail to allow for peaceful dying and moreover, force our hand to perform interventions that may actually prolong dying.

I believe care providers perform at their best when they recognize these decisions require reconciliation of emotional and rational thought. If either component is missing, patients and families are unlikely to be able to make the decision to accept end-of-life care.

In our best moments, our health system, often aided by the palliative care team, truly supports patients and families when they are facing the most difficult decisions they will ever have to make.

James Fausto is medical director, palliative care program, Montefiore Medical Center.

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  • sandyvc

    My terror is that I will become even more terrorified and there will be no family as they shunned me for mental illness over 50 years ago and had refused in my childhood to seek help because it was a character flaw not an illness. Being brutalized in a Baptist Church and by my mother at their behest made me both afraid of death and unable to stop ruminating. I do not believe in Hell and I do not believe I am demon possessed as I was told. Yet, the fear lives on. I have done all the therapies and most of the meds and am not even remotely stable. I have found psychiatrists to be arrogant jerks who have not looked into their “science” since they graduated and my part of the country does not cover therapy or even full payment of medications on health care. My family doctor is a nice lady with almost no education in the medications and therapies for mental illness. Half her practice now is for depression! The waiting list is so long that I have been waiting for a new psychiatrist for 6 years.

    I am more fortunate than many as I am in Canada. Not the best place in Canada but still better than no help in the US. But, as this article shows, emotional and rational reasoning do not always work together. I have no trouble at all with reasoning as long as the emotional side is not trapped in a loop.

    What about all the mentally ill people facing death who are already in existential crisis? How do you comfort a person who has been bullyed and abused because of illness all their lives, never found love or safety? Do we just keep on kicking them to the curb? I am usually able to protect myself by isolating and trapping my brain in games, books and TV. But I don’t want to die alone playing War Craft.

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