Abstract
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The patient was treated aggressively with antibiotics and other medical interventions but made no progress toward improvement. Clinically she looked worse and her laboratories showed little overall improvement. We scheduled another goals-of-care discussion with the family. Before the meeting with the family, the palliative care team convened to discuss what points we felt were necessary to cover. We typically “huddle” before meetings to ensure we are presenting a unified message and not one that can confuse the family. It's also essential to connect with the treating medical team so we don't deliver a contradicting message.
Our new palliative medicine fellow started the meeting by asking the husband to describe what he thought about the patient's current medical condition, as is customary. The husband looked incredulous. The palliative fellow then asked, “What does it mean to you for your loved one to be alive?” At this point the husband seemed frustrated as demonstrated by his body language. He then said, “Why are you asking me these questions? “You are the doctor, you do whatever you can to fix my wife.” Sensing that the palliative fellow and the husband were not understanding each other, our palliative care social worker said, “Nothing the medical team can do will restore your wife to her former state of living.”
We finally realized the husband did not seem to understand that his wife would never be restored to the person she was before the devastating stroke she suffered a year ago. After some further explanation, we went on to describe the mechanism of comfort care, where the goal is to keep her free of pain and symptoms, and to ensure she is not subjected to unwanted medical intrusion. The patient's son and daughter began to cry. The husband, who initially presented as strong, stoic, and maybe even impervious to sadness, began to show signs of softening and grief. Our social worker, determining the husband needed a simple touch from a caring human, placed his hand on the husband's shoulder. He began to cry. I started to say something, but our palliative medical director used a hand motion to encourage me to remain silent. As the tearful silence continued, the husband's affect reflected the sadness that washed over him. The daughter's crying became more evident. She looked at her father, and I imagined her thinking, “I cannot believe what is happening- why aren't you speaking up for mom.” I considered asking her what she was feeling, but I decided that speaking at that moment might detract from the “goal of our meeting,” which was to ensure that the family was fully informed as to the current medical reality and prognosis. The father's body language relaxed further when the palliative fellow apologized to him for any miscommunication on his part. As time moved forward, I ventured an observation that perhaps the sadness was related to the reality that some medical conditions have no medical cure, and all human lives have physical limits. After more explanation from the social worker regarding what comfort care in the hospital and hospice care outside of the hospital would entail, our medical director asked the husband if he thought comfort care would be an option consistent with the goals of care. The husband spoke quietly, saying, Esta Bien (it is ok with me).
As some of the emotional tension in the room began to melt away, the daughter grabbed her stomach, stood up, and motioned like she was going to vomit. We looked for a blue emesis bag and found none. The daughter moved toward the trash bin and vomited. The pain in my heart was visceral as I heard the wretched sounds of vomiting. In my seven years of chaplaincy, I've never witnessed such a physical demonstration of emotional pain. Our doctors tended to her medical needs while the social worker spoke comforting words and instructed her in deep breathing. The daughter moved outside of the conference room while the medical director verified the husband's wishes regarding comfort care. Once again, the husband spoke quietly Esta Bien.
After the meeting ended, the interpreter told us that she had been in previous meetings with this family. She indicated that the husband often would “explode in an angry outburst,” and focus only on the day's particular acute medical issue. The interpreter expressed her surprise that the husband had stayed present and had talked about the patient's long-term prognosis.
On a practical note, several hours after the family conference, we brought “comfort food” to the patient's family who were still in the emergency department. The husband displayed a changed demeanor that demonstrated a calm acceptance of the situation. Later that day, the patient was transferred to a community hospice home (General Inpatient), completely bypassing a stay in the intensive care unit.
Being trained in clinical pastoral education (CPE), I reflected on the reasons the husband remained present during this meeting. 1 Was it the words that any of us spoke? Did he begin to comprehend the big picture? Did the empathic gestures from each member of the palliative care team influence the process? The answer to these questions will remain a mystery. However, continued reflection caused me to wonder if his change stemmed from having time and space to express his emotions through a variety of sounds. 2 These sounds began with the silent screams of seeming frustration that moved to tearful silence and finally, Esta Bien. As the palliative team debriefed following the meeting, the medical director explained his hope/belief that allowing the silence helped enable the husband to come to grips with the pain of his wife's medical reality. Nothing we could say would ease his pain. There was no way to go “around the pain.” He simply had to go through the pain. In addition, he relied on our medical expertise to help him understand the limits of our interventions. The palliative team supported him throughout the entire process. Perhaps our presence and empathy helped. Although we can't completely know, the experience confirmed my CPE training 3 that silence is not inherently “bad.” Also, emotional pain is not inherently bad, but is, in fact, a fundamental aspect of the human experience.
In addition, the vitality of providing truthful and accurate prognostication remains paramount. Best-case/worst-case scenarios provide the family with some sense of what to expect as time marches forward. However, it's the physician's job to provide the “most likely” scenario. Head trauma, traumatic brain injury, and strokes provide a challenge to physicians as they grapple with prognosis and treatment plans. 4 This case illustrates how difficult it is for families to absorb the reality of devastating medical conditions. It also makes clear the importance of spending time with families to allow emotional responses to surface, often making it possible for better understanding of complicated medical conditions that are not amenable to ongoing medical interventions.
Finally, this case illustrates the importance of the interdisciplinary team in the effectiveness of a palliative care service. As a physician, I can get wrapped up in the medical aspects of a case. Having a nurse, a social worker, and chaplain represents a secret formula for effective connection during a goals-of-care discussion. Of course families crave the medical information updates and cling to the hope that the information presented from the medical team will be positive. However, the emotional valleys, the spiritual or religious questions, and the medical merry-go-round, underscoring the trauma of watching a loved one fade from this physical existence, require a team of trained professionals to bear witness to that struggle.
Footnotes
Acknowledgment
I thank Chaplain Dave DiPalma for his significant role in the writing of this article. His expertise and insights are an integral part of this composition.