An earlier “secular” version of this piece appeared as an Op-Ed in the print and online versions of Wall Street Journal on December 19, 2014. It was agreed upon in advance that once the 30-day WSJ sole sight publication policy had expired, that we would publish a version with more developed Catholic discussion points that were not included in the WSJ version. Permission was obtained from the family to publish this story and the names and patient identifiers were altered to maintain privacy.
Also available in audio format at Our American Network
I had a patient recently whose death was particularly harrowing. The experience allowed me to reflect on the importance of both “taking” and “dealing with” each patient’s spiritual history. I would imagine that as a healthcare professional, you can think of many patients for whom you have taken a spiritual history and discussed their religious values, but flip the thought process over to the majority of patients in your practice with whom you do NOT have this conversation. Consider, for example, those patients who don’t “seem” very spiritual (let’s face it, we all make these mental miscalculations)? Are those the ones you for whom you “skip” the spiritual history? In how many of your patients over the years might you have learned something important that would have allowed you to serve them better in either subtle or not-so-subtle ways? It is true that in the time of our New Evangelization, as Saint John Paul II called it, we must open ourselves up to bring Jesus’ message to those open to it, but it is also true that proselytizing is not endorsed by the Church and should play no role in our daily practice of medicine. Furthermore, “preaching” unilaterally to a person who did not request or would not prefer this as part of his/her medical experience would be abuse of a power differential. Thus, by this example, I hope to illustrate just one patient example of how such an interaction unfolded:
Thirty nine years old. PhD Scientist. Brilliant. She was sent to our ICU team as a “fascinoma” (meaning a person with a constellation of problems the doctors couldn’t figure out). Fine until two months earlier, now she was more and more short of breath, peeing a little blood, had pain in her toes which were turning blue and red in the cold, and then on imaging had a vegetation on her aortic valve and infarcts in her kidneys. She was diagnosed with pulmonary emboli and anticoagulated, but continued getting worse. Her lymphocytes were extremely low and she was anemic. So much going on. Within 24 hours of meeting her, she had a myriad of tests and labs drawn, and the list of possibilities was led by infections, cancers, and rheumatologic diseases like lupus. I pushed for a bronchoscopy, but others said it wouldn’t change what we were doing and argued to move ahead with anything treatable. I could see though that the uncertainty was extremely disconcerting to her and she said, “I’m a data person. I’m a scientist.” “Are you more conservative and can live with our guessing, or are you more of a risk taker.” She immediately said, “I’m not risk averse.” If we were to do the bronchoscopy, we had to do it right away because of her increasing dyspnea, but transport in the hospital was busy and the back-up for a procedure room was mounting. So I told her, “Let’s go.” The fellow and I wheeled her down there and bypassed enough systems that lots of people were annoyed and surprised. Thankfully, she tolerated the procedure really well and as we wheeled her back into the room, she was sedated but on minimal support and pining for an answer. The bronchoscopy and needle biopsies showed angry cells with too much nuclear size for cytoplasm and prominent nucleoli. Cancer. It was everywhere then. And the fluid we washed from her lungs hoping for infection, turned out to be filled with cancer as well (but we wouldn’t know that for some time).
It was a whirlwind because she got more and more short of breath by the hour as the cancer literally filled her lungs. We went from her arrival in the hope of figuring out what was wrong and seeking a cure, to talking about how when she got back to her lab and students, she’d resume where she’d left off, to the depths of despair in relinquishing control completely to the illness and her fate of imminent death. Her mom’s head was spinning as she lay there intubated on life support, and her sister was printing off her will from an IPad and having things notarized. It was totally surreal. I won’t forget the look on her face of total shock and surprise, as if she’d heard me wrong, when I told her the cells we’d see under the microscope were all cancerous and that this had already spread throughout her whole body. The looming threat, which I felt intensely and painfully myself as her physician, was that at any minute she was going to throw another large embolus, go into pulseless electrical activity (PEA) arrest, and get bone crunching chest compressions (knowing her bone marrow was totally metastatic at this point and thus overly weak and brittle). Conversations with her sister were hard to say the least, and at times she got very weak, but she affirmed that we had to pave a way to avoiding her further suffering. With her mother, however, it was much worse. She just looked at me through tears and fear and screamed, “This is not fair.” Over and over. By grace, we shifted from life support and escalation of care to the abandonment of self-control and into the peacefulness of dying without tubes and lines and buzzers. Only 8 hours after telling her that she had this incurable illness and that our hope (which even at that time seemed plausible) was to get her off the ventilator to talk to her family, she stopped breathing and died quietly without any apparent awareness of suffering.
Throughout the day, I was diligent about maximizing her face time and interaction with her mom and sister, even using a specific approach of pharmacologically sedating her to balance comfort with a clear sensorium so that she could really engage with the family. Then we needed to make a transition, and that was the benevolent approach to total comfort. My last memory of this young scientist is that of her breathing, unconscious, and unaware of her surroundings. At this point she was newly comatose on the opioid and benzodiazepine drips to remove pain and awareness of shortness of breath. I urged her family, nevertheless, to tell her “what you want her to know.” It helps them to have no regrets tomorrow.
The story is many things, and to you it no doubt means something quite different than it does to me. For example, for me one of the most enduring aspects of being her physician was the palpable oneness I felt with her in knowing how in-synch we were with everything “body and mind.” There was an unusually tight connection, and we both knew it. Since antiquity, the greats such as Plato and Aristotle taught the concept of body, mind, and spirit as the fullness of existence – a triad still embraced by many today. We were totally simpatico after talking about those first two, and then she perceived and commented on a beautiful and intriguing divergence. In the midst of our conversations, the mother announced that her daughter was agnostic. I realized that up to that point, perhaps because of the sheer rapidity of the way things were unfolding, I had neglected to take a spiritual history. Since I teach this in physical diagnosis class to medical students and to residents, you would think that I wouldn’t fall prey to this deficit, but I had. The literature shows that most patients want to be asked about their spiritual beliefs or non-beliefs, and that many consider it rude if healthcare professionals don’t consider this important piece of their well-being. The question should be asked out of respect and in a completely non-judgmental manner (as one might take a sexual history: “do you have sex with men, women, both, or neither?”). Thus, I said to her, “Do you have any spiritual values that you want me to know about that might influence your medical decisions?” She affirmed what her mother had told me, “Yes, I am an agnostic, and it’s OK that we differ on that.” I nodded my head in the affirmative and was left to wonder how and why, without having talked about this earlier, she’d surmised this and then thought it important to reassure me. While many agnostics would be open to meeting with and sometimes even praying with a chaplain or priest, she made it clear to me that she was not. So out of respect for her wishes, I went about making sure others didn’t keep asking her or the family about hospital chaplains, priests, et cetera.
There we were: two people locked into a swirl of impending death. The fact that my beliefs and those of this young woman differed drastically didn’t affect the manner in which I prayed for her silently to myself as we went hour to hour through her clinical course. Judging by her comment to me, it didn’t matter to her either. At one point, her sister said to me outside the room, “Dr. Ely, I am a Christian and my sister was baptized. Although she struggles to know what to make of God and the afterlife, I want you to know that we are all thankful that you asked her point blank if she needed anything form a spiritual realm. I can assure you she appreciated it as well.” This comment by her sent me straight back to her bedside, where I felt the connection we had was immense and palpable, forged in the heat of a single day of relentless and battering revelations about her body and what was happening inside it.
An autopsy will answer many questions, like what was growing on her heart valve and the source of her cancer, which we think was bowel, pancreatic, or ovarian, but no physical finding, microscopic sighting, or laboratory test is going to help me learn any more about her spiritual side. I am left with the blunt instrument of my own personality and the memory of having looked into her eyes and having talked to her. I remember already her beauty, love, and inquisitiveness about life. I know she was thinking of her estranged father, her students, and her nieces whom she’d never see again. Yes there was fear in her eyes, but much more there was courage and daring to face what was happening despite not wanting to hear the worst possible news. I could feel the sinew of connectedness that we all have in our imperfect and vulnerable human-ness, and I can still feel it now. What a privilege to be a part of that embrace.
Wesley Ely, MD, MPH
Vanderbilt University Medical Center
President, Nashville Guild of the CMA