How I Learned the Importance of Listening to My Patients

It was 1986: The end-stage AIDS patients were roomed with the Alzheimer's patients in large sterile rooms at the top of a hospital in Scotland. We did not yet understand either disease, and both diseases frightened us. It felt like the patients were being quarantined on the top floor of the Royal Infirmary to be kept away from any doctors' rounds, visits from children, or volunteer groups.

I was doing a junior semester abroad in Edinburgh, Scotland, for my undergraduate degree in religion. I planned on becoming a doctor since a young age and thought biology was going to be my major, as so many other pre-med students do. After planning my major, liberal arts called me to other classes to balance my sciences. I fell in love with my first religion class - it was taught in a large auditorium with many other students. We listened to descriptions of so many religions around the world; learning that most cultures practice some form of belief system. As I signed up for more classes in the religion department, it became clear that there was much more to religion classes than just "bible study." I added a minor in philosophy, as I thought the ethics studies would help me in the field of medicine. At that time an ethics major did not exist at our institution so I cobbled a few classes together focusing on the ethics of disease/healthcare and decision-making in limited resources. Little did I know how much these classes would guide my decisions right into the future of medicine.

My junior year, our group of 25 religion majors journeyed to Edinburgh to study Kierkegaard, a controversial philosopher, and write some grand papers. As I was the one student who knew I wanted to go into medicine, the school enrolled me in one class, separated from the others, in pastoral counseling. I did not even know what that meant, but trusted the department to guide me to classes that would assist in my pre-med training. So, beside my courses in Kierkegaard and pastoral counseling, it was suggested that I train for a few short months with older students as a pastor in the Royal Edinburgh Infirmary.

I did not understand the influence this would have over the rest of my career, and frankly my life. I was overwhelmed at the time, studying next to gentlemen from West Africa, England, and Scotland, who planned to become pastors upon graduation. First I would need to know what a pastor in a hospital setting did, and why they were needed. Honestly, at the time, I thought it was just Scotland that took the time to train lay people to become pastors in a hospital. My father and grandfather were physicians and I do not recall them mentioning any training in pastoral counseling or even pastors in the hospital setting.

But this was Scotland, and maybe they are more religious here, I reasoned. I learned to sit at a patient's bedside and ask which religion he preferred, "Anglican or Catholic." I learned to ask, "Would you like to pray together in your time of need?" At the age of 20, this was overwhelming to me - I was taught to keep a journal of each patient encounter, recording my gut reactions and emotions to their illnesses. We would then discuss our insights and our emotions in weekly group meetings, so we could reflect together and make sure no one was becoming depressed.

Besides the obvious influence of being taught at an undergraduate level to ask spiritual questions of dying patients, I was taught to reflect and understand my own distraught and sorrowful reactions. I hold that this would be a healthy way to handle the daily pressures of patient care today.

After a patient's death in the ICU setting last week, there was no meeting after the code to discuss our emotions or reflections on the dying patient and his family. I could have used that. The writing of late in our journals and government mandates calls for ACO's, group treatments, and patient-centered medical home models. Can we distill this even more to groups whereby we reflect and support each other not just in grand rounds or tumor boards, but in our own reactions to patients, stressful situations, and medical demands? Weekly short meetings to support each other, and of course, the patients we treat, may in turn make us better caregivers. This may also be a cost saver to prevent physician burn out and addictions. I notice residents in training often have meetings to discuss tough situations. What happens when we graduate to the real world? It seems just our spouses get the job of our debriefing and defining our grief!

In 1986, HIV was a new disease and we did not have treatments, or even an understanding of what was happening. Patients with this disease were assigned to the large rooms of eight at the Royal Infirmary, where the advanced-dementia patients also resided, waiting to die - as the nurses could give end-of-life care. My job was to hold a hand, ask questions about their understanding of death, and if they wanted, to pray together. Seeing an 81-year-old white-haired man next to a 25-year-old cachectic Scottish gentleman confused my undergraduate brain. I just sat next to each patient and listened.

Sometimes they would just take a sip of water. Sometimes, they needed to be fed. I felt I comforted, and hoped I was healing hearts. I felt I represented hope for them in their time of need. I heard end-of-life confessions, not that I was trained for that, but when you are there by the bedside of a dying person, it comes at you, and you cannot ask them to wait for a properly trained pastor or priest. I assuaged guilt as best as I could, and treated my patients with everything I had at the time - which was time and a big innocent heart. At the Royal Infirmary we did not have medications to assist patients in dying, nor hospice to provide counseling or to adjust morphine doses.

I was scared of patients being contagious. I was scared of not know what to say. I was scared to leave them after just a few months together. But I learned. I learned how to hold my dying patient's hand in the telemetry unit, suffering with end stage CHF. I learned how to quietly pray with my 15-year-old patient. We did not share the same religion; we did not need to. I just listened and cared. I will never forget my patients' thank yous, tears, and hugs.

All these years later, I see journal articles teaching residents how to bring up prayer with their patients. I see articles on end-of-life care, palliative care, and the development of fellowship programs in palliative medicine. Not realizing that I was a pioneer I chose geriatrics, 20-years ago, as my specialty. Most days I do not cure patients in my practice; nor do I cut and heal with surgery. But, I assist them in their time of need, in their last moments in life, by just being there by their side. My biggest influence came long ago, in a dark, cold, upper-floor of the Royal Infirmary of Edinburgh.

Michelle Stowe Ong, MD, is a practicing third generation internist, specializing in geriatrics and integrative medicine in Mooresville, N.C. She trained at Dartmouth College, Emory Medical, and Johns Hopkins Bayview prior to moving to North Carolina with her husband and two daughters. She enjoys running, traveling, and working in Peru on medical campaigns.