Abstract
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My colleague and I discussed how to approach the pre-meeting with the NICU attending and the family meeting following. We discussed the specifics of the case and reminded ourselves to be mindful of focusing on harmlessness during both meetings.
We met with the attending, introduced ourselves and asked for his thoughts. He appeared apprehensive as he started to relate the story of his care for the patient. He spoke passionately for 15 minutes, and, specifically, about how the difficult interventional neuroradiologic procedure had been highly successful. He was hopeful because the patient was improving. He thought the patient had a good chance of recovering to the point of some meaningful interaction with his family although it would probably take months in a rehabilitation facility. The attending spoke honestly of the uncertainty as to the level of functional and intellectual recovery. We acknowledged the complexities of making recommendations for care when so much was unknown. He looked calmer and had an inquisitive look on his face when he finished speaking. He smiled warmly and thanked us for coming to the meeting.
When the family meeting began, though the attending had agreed to let us lead the meeting, he immediately initiated a string of rapidly spoken words, rife with medical terminology, describing the patient's improvement and pressing how critical it was to continue aggressive care for his survival. I thought I could see the hair rise on the back of the neck of the patient's wife. My colleague gently interrupted, greeted everyone and initiated introductions. She then asked the family if the attending could give further information on the patient's condition, his recommendations for care, and his perspective on why he was giving them. My colleague spoke with a soft and calm voice. She finished with how sorry she was that the patient was so ill and that our mutual intention was to give him the best care. The family agreed and the attending as well as family members noticeably settled down more into their chairs. After the attending gave his perspective, we thanked him. Further discussion ensued, much of it as an intense debate between different family members and the neurosurgeon. We found an opportune moment and asked the family to describe the patient as the person he was before he became ill. We also asked how they viewed him at the current moment. They spoke of him as a former judge: esteemed, brilliant, fair but decisive and fiercely independent. He continued to work daily, though retired, from sunup to sunset either physically or intellectually and always with intensity. His entire life was a song of autonomy and self-reliance. This was his definition of dignity.
His wife wept as she recollected an event six months prior. She and her husband had visited a friend in a nursing home. During the evening her husband had knelt before her and swore to take care of her and never abandon her if she were ever ill, no matter what afflicted her. He would abide by her wishes. He then insisted she kneel with him and promise that if he were ever gravely ill and there was uncertainty regarding a rapid and complete recovery, she would let him go. He had said he knew she loved him deeply, but she must let him die. She had knelt with him and promised. Now she already felt she had betrayed him by allowing the interventional procedure; she felt she had been weak but had not wanted him to die. She had 10 full days while he was in the NICU to gather her strength through reflection and knew he would hate this undignified experience and be furious with her, if he could look into his ICU room now. She must fulfill her promise. She incrementally slid forward to the edge of the seat of her chair as she spoke and one knee rested on the floor when she finished. There was a minute of what would have been silence but for the murmurs of mourning. I said I was so sorry. It was more than tragic. The attending quietly said he was sorry and would arrange for hospice to come immediately and expedite the patient's transfer to their home.
When we left the room the attending was visibly shaken and said he felt so ashamed. A tear rolled down his cheek as he said it certainly hadn't been his intention, but he felt he had forced the family to beg him to let their loved father and husband go home to die. He said, “I just didn't know.”
My colleague and I marveled at what we had just witnessed.
I reflected on the events later and specifically on our discussion before the meetings. We had spoken of harmlessness. A simple behavior, like wrapping a scarf around one's neck in the cold, it is present in our work on many levels. However simplicity, in the context of behavior, seems to draw on intuition and can have unexpected and significant effects. When focusing on harmlessness during interactions, it seems to shift listening. While hearing content, there is an enhancement in interpretation of nuanced body language and qualities of speech, like volume, tone, and cadence including that of discordance. More of the meta-message is heard. This is a limbic listening that we all do but may not always interpret so mindfully. In contrast to only literal listening, it can clarify subtle signs of fear, anger, or the perception of not being heard or understood and may enhance our ability to respond with unique support. Harmlessness is a bilateral blessing benefiting the employer and recipient.
So much of what we attempt as palliative care providers is to create a safe place where people are invited to tell the terrible truth. Rita Charon, MD writes about narrative medicine. 1 She speaks of the ‘autobiographical gap,’ a notion discussed in narrative theory. Charon describes it as a space within the autobiographer between the narrator-who-writes and the protagonist-who-acts. She states the distance in the gap allows reflection. It is powerful and the autobiographer holds him or herself in a heightened way with new knowledge of a coherent existence. I think of it as a holistic locus within the individual. Harmlessness may guard the place within pain where an autobiography of the moment is created. And it may guide those to whom it is offered into this gap of deep meaning at that moment. I think a patient or family member's awareness of a harmless presence encourages oral narration of these flash pathographies and invites those in witness to enter the story in a different way than they already have. I have seen innate courage within patients or families drawn out as they tell their personal stories and move medical providers, often, to view them with awe. Communication occurred at a level deeper than that to which we are accustomed, and commanded attention. Dr. Rachel Remen at the Institute for the Study of Health and Illness, writes about health care providers developing the perspectives of wonder and awe as alternative lenses that may be used to view patients. 2 She speaks of their potential for healing. I think personal narratives, each singular and all worthy, are more than just heard and direct us to these alternative perspectives. The authenticity and generosity of these expressions may catalyze mutual healing for narrators and the medical professionals who listen. Their power can equal the criticality of the illness with an opposite effect.
I see physicians constantly pause and respond with patience, listening, silence, suspension of judgment, and empathy, though patients and families act aggressively, question abilities, and blame the care provider for outcome. Why? I feel providers sense something profound behind the behavior. Our human nature, encoded with the DNA of kindness, might be guiding us. I also think it is easy to miss this same sense of the profound as we interact with our colleagues. Lisa Marr, MD, chief of palliative care at UNM Hospital, reflects that no one comes to work at the hospital saying, “I think I'll do a bad job today.” Behind every behavior is a story. As with patients, the generous listening by a colleague to a medical professional's narrative of care may provide the narrator and listener with an opportunity for discovery or perhaps for just making some sense of seemingly incomprehensible events. Maybe this is all a medical provider has amidst his or her volunteer engagement in a patient's immutable tragedy.
We have many weapons to fight disease that are quite sophisticated. Though simple, harmlessness may encourage profound outcomes. It has long been a point on our ethical compass for guidance. But it may be utilized more directly as an implement in medicine. Its mindful and artful application reflects our lineage and may unearth narratives of healing for patients, families, colleagues, and us.