Ventilators and their vital role in saving lives of COVID-19 patients are ever present in the news. Listening to these compelling stories brought to mind an experience with a patient as he weighed the use of a breathing machine in his end of life care.
I was at the front desk when Rob, a friend of a patient, entered the reception area. We had met on several occasions when accompanying his friend to chemotherapy appointments and was with him again today in the ER. He came to the cancer center to speak with Dr. M, his friend’s oncologist. I explained that he was out of the office but another oncologist was covering. Rob was frantic because his friend, when asked by the ER doctor if he wanted all measures taken to help him breathe, had agreed to be placed on a ventilator. Rob felt his friend was confused because he knew it was not what he previously indicated. Besides, he told me that the patient’s father, his health care proxy, was on his way and would verify that his son did not want to be intubated. Then, Rob reached in his pocket and showed me the patient’s Living Will and yelled, “Isn’t this proof?” I asked him to wait while I hurriedly searched for Dr. W, the oncologist covering for Dr. M.
I conveyed what Rob told me. Dr. W went to her office to review the medical record, looking for an advance directive. There was none. However, she shared that the ER doctor had called to say the patient appeared to have medical decision-making capacity and indicated that he wanted all measures taken to help him breathe more easily. She went on to tell me the ER doctor and patient discussed what it would mean being on a ventilator and he consented. “Unfortunately, I don’t know this patient. Do you?” she asked.
I told Dr. W that I met the patient at the time he was diagnosed with advanced pancreatic cancer while an inpatient at the medical center. I explained that one of the hospitalists, who was familiar with my role in facilitating doctor-patient communication, asked me to consult with him about his understanding of his condition and that we continued to meet throughout his treatment at the cancer center. I told Dr. W that the patient and his oncologist recently agreed on a plan to get pain under control and be placed in Hospice at home. The patient had made it clear that he did not want to die in the hospital. Dr. W scrolled through her computer to find a note confirming that plan. It was there in the patient’s chart.
Dr. W could not leave the clinic at that time so she asked me to go to the ER to see what the patient understood about what life-sustaining measures could mean to his quality of life with the time he had left.
As I walked with Rob from the cancer center to the ER, I thought about the medical humanist’s role in bridging communication between patients, loved ones and healthcare providers. I did not function as a social worker, counselor or patient advocate. I was a writer who documented the patient’s perspective of illness, which served as a tool to address what may have been misunderstood in the medical encounter. I had also observed that doctors were often faced with the difficult task of reconciling patients to a life-threatening illness and, in this instance, someone’s impending death. I asked myself, what did the ER doctor say to him? How did he say it? What did the patient hear and comprehend?
I arrived in the Emergency Room and introduced myself to the ER doctor and hospitalist, both of whom I had never met. I heard myself say, “the medical humanist’s role is to help facilitate communication between doctors and patients.”
The doctors seemed to nod in unison as one of them said, “We need help with communication.”
I looked at the patient on a gurney and we smiled at one another. You didn’t have to be a doctor to see that he was struggling to catch his breath. I asked him if he understood that the doctors were suggesting a ventilator to help him breathe. He nodded. I reminded him of our last conversation when he had been admitted to the hospital for pain management. He had expressed his wish to be comfortable at home under Hospice care, have his advance directive honored and not be readmitted to the hospital. It was all spelled out in writing. In a respectful manner the ER doctor interjected to say that when the patient was asked if he’d like help breathing, he agreed to being placed on a ventilator. At that point, I was advised that his verbal consent took precedent over the written Living Will that he had signed just weeks before.
I asked the patient if he knew that his father was on his way. He nodded and whispered that he was bringing his favorite chocolate chip cookies baked by his aunt. I looked toward the doctors and then turned to the patient to remind him that the breathing tube would not allow him to speak or eat. He smiled and said, “You mean I can’t have any chocolate chip cookies?” There was laughter. I gently told him, “no chocolate chip cookies.”
I turned to the doctors and asked if there was anything else that could help with his labored breathing. They offered morphine. The doctors explained that the drug could lessen his distress and allow some time for his father to arrive. He agreed.
The patient was admitted that evening and died the following morning. He had a chance to have some cookies.
dorothy zeide
Good job
Vicki C Dejnozka
Celia, without your participation in this conversation I think the outcome for this patient would have been very different. Most likely not one that he would have wanted. Good job.
Vicki
Amelia Silver
I love this story. It captures the essence of a universal dilemma—- how can we convey what we need, want, feel—- and the simple, elegant solution: listening, standing with ears and heart open, and being brave and graceful enough to share what you have heard, to be in a sense, the bridge. Very moving and beautifully rendered account Celia. Thank you for what you do.