“What I Learned from a Dying Patient,” by Dr. E. Wesley Ely
By John Graham
December 21st, 2014
Many people today say they are not religious but that they are spiritual. Which begs the question, what is spirituality? I often hear spirituality as being where we find meaning and purpose in life. It is that, surely, but I prefer to define spirituality in relational terms. To me, spirituality is the innate human ability to connect — to connect to oneself, to others, to creation (our environment and the creatures of this planet, i.e., our pets). And, for me, spirituality includes the ability to connect with the divine mystery many of us call God. Wholeness means being in touch with every area of what it means to be human — body, soul, and spirit.
Recently, the Wall Street Journal published an article by a physician who describes the “connection” he made with a patient who was dying. His patient was agnostic and he was not, yet they connected. It is a great story of spirituality at work even when our beliefs are not the same. It is a witness that spirituality is more than beliefs. Much more. Read below Dr. Ely’s fine article.
John K Graham, President/CEO
“What I Learned from a Dying Patient”
By E. WESLEY ELY
WSJ, page A15, Dec. 20, 2014
I had a patient recently whose death was particularly harrowing. Thirty-nine years old. Ph.D. scientist. Brilliant. She was sent to the ICU team as a “fascinoma,” meaning a person with a constellation of problems the doctors couldn’t figure out. This woman had been physically fine until two months earlier, and now she was growing progressively shorter of breath, had a little blood in her urine and had pain in her toes, which were turning blue and red in the cold. Imaging showed that she had a growth on her aortic valve and that sections of her kidneys were dying. The doctors at the outside hospital had diagnosed her with blood clots in her lungs and started her on a blood thinner, but her condition kept worsening.
As the day progressed, we started all the needed tests and interventions to help sleuth-out the problems and “fix” them. Hours into my periodic conversations with her and her mother and sister, her mother mentioned that my patient 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 medical students and residents in physical-diagnosis class about the importance of taking a spiritual history, you’d think that I wouldn’t fall prey to this oversight, but I had. The literature shows that most patients want to be asked about their spiritual beliefs or nonbeliefs, and that many think it rude if health-care professionals don’t consider this important aspect of their well-being.
The question should be asked out of respect and in a nonjudgmental 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?” We’ll get to her answer in a minute . . .
Within 24 hours of our meeting, the patient had been checked with an array of blood tests and imaging studies. The list of diagnostic possibilities was led by infections, cancers and rheumatologic diseases like lupus. I pushed for a bronchoscopy (looking into the lung with a light and lens), but others said it wouldn’t change the care we were already giving her and argued that we move ahead with anything treatable.
I could see that the uncertainty was extremely disconcerting to her. “I’m a data person. I’m a scientist,” she said, to which I replied: “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 shortness of breath, but transport in the hospital was busy and the backup for a procedure room was mounting. So I told her, “Let’s go.” The young attending physician and I wheeled her several floors away and bypassed enough systems that lots of people were annoyed and surprised.
Luckily, she tolerated the procedure well and as we wheeled her back into the room, she was sedated but pining for an answer. And there it was: The biopsies showed angry cells with too much nuclear size for healthy cytoplasm, and prominent nucleoli. Cancer. It was everywhere.
It became a whirlwind because she got shorter of breath by the hour as the cancer and fluid literally filled her lungs. We went from her arrival in the hope of figuring out what was wrong and seeking a cure—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.
The patient’s conversations with her sister were difficult, to say the least, and at times they both got very weak; eventually they both affirmed that we had to pave a way to prevent my patient’s further suffering. With her mother, however, it was much worse. She looked at me through tears and fear and screamed, “This is not fair!” Over and over. Her sister began printing off her will from an iPad and having things notarized.
I won’t forget my patient’s look of shock and surprise, as if she’d heard me wrong, when I told her that the cells we’d seen under the microscope were cancerous, and that the cancer had already spread throughout her body. The looming threat was that at any minute she was going to throw another large blood clot, go into cardiac arrest and be subjected to bone-crunching chest compressions.
We shifted her from life support and the escalation of care, to the abandonment of self-control, and then finally into the peacefulness of dying without tubes and lines and buzzers. Only eight hours after we told her that she had this incurable illness and that our hope (which at the time seemed plausible) was to get her off the ventilator so she could talk to her family, she stopped breathing and died quietly without any apparent awareness of suffering.
Throughout the day, I had tried to be diligent about ensuring that she was able to spend time with her mother and sister. The initial challenge was to use a specific approach toward sedation that balanced her comfort and her clarity of mind 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 sedation and pain killers as we removed the breathing tube and ventilator. I urged her family, nevertheless, to tell her “what you want her to know.” It helps families to have no regrets in the days that follow.
The story is many things, and to you it no doubt means something different than it does to me. As this woman’s physician, I find that one of the most enduring aspects of the story was the palpable oneness I felt with her and in knowing how in-synch we were with everything “body and mind.” There was an unusually tight connection, and I sense that we both knew it.
Since antiquity, the greats such as Plato and Aristotle have taught us the concept of body, mind and spirit as the fullness of existence—a triad still embraced by many today. My patient and I were in tune after talking about those first two, and then, when I “took her spiritual history,” she perceived that our beliefs diverged.
She affirmed what her mother had told me, “Yes, I am an agnostic, and it’s OK that we differ on that.” I nodded and was left to wonder how and why, without having talked about this earlier, she had both understood that we differed in this third piece of the triad and thought it important to offer me reassurance. For my part, I went about making sure others didn’t keep asking her or the family about hospital chaplains, priests, etc.
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 remember her loving manner and her inquisitiveness about life. I know that she was thinking of her estranged father, her students, and her nieces whom she’d never see again.
She wasn’t sure about the existence of the Divine, but her courage—daring to face what was happening despite not wanting to hear the worst possible news—utterly confirmed the human spirit. She revealed the connectedness we have in all of our imperfect, vulnerable lives, and I can still feel it now.
Dr. Ely is a professor of medicine and critical care at Vanderbilt University Medical Center.