By Joel Klas, MS4
As with all writing published on Stories in Medicine, locations and names in this piece have been changed.
One of the most impactful insights I received into understanding patients came before medical school as I volunteered for a hospice program. During the training, our leader often pointed out that patients, especially hospice patients, do not see themselves as we see them in the hospital. When we as physicians and medical students meet a patient, they are often gowned, tired-looking, weak, sick, and often alone. In this setting, especially with our medical system’s strong focus on pathology, it is very easy to view patients solely as their disease and their data points.
Take Mr. Rodriguez, an 80 year-old gentleman with a 50-year smoking history and stage four cancer who was refusing treatment and had presented with severe dyspnea due to a spontaneous pneumothorax secondary either to his severe emphysema or cancer. You may be able to picture this patient already, and the image you have probably fits. You might also be thinking about his poor prognosis, need for hospice, and have an accurate mental picture of his cachectic appearance, chest tubes, oxygen requirement, and grimace from his pain.
When I asked Mr. Rodriguez to tell me about himself, he did not mention any of these things. These were realities to him but did not represent his self-view. “I am a former CFO of a biotech company. I shot a 10 handicap nearly every day until this stupid cancer happened. I put myself through college after my wife left while I took care of my 2 year-old daughter which was highly unusual at that time, and now my daughter has a wonderful family with two kids and runs her own business.”
Another patient I met, Mr. Smith, was four years into having progressive idiopathic pulmonary fibrosis and was being readmitted into the hospital for hospital acquired pneumonia. Mr. Smith’s pulmonary fibrosis had reduced him to skin and bones and was making him live a vicious anxiety positive feedback loop. Already anxious from becoming dyspneic, Mr. Smith would start breathing faster with any type of conversation, thus making his dyspnea worse and increasing his anxiety level. As such, he refused all conversations with physicians or nursing and he tried to calm himself by watching reruns of Andy Griffith and I love Lucy. Mr. Smith also refused all medication to calm his anxiety and dyspnea, accepting only oxygen as he did not believe in those “pain killing medications that kill you.” Mr. Smith presented an emotionally complex case for our medical providers, as we could offer no treatment to halt the progression of his disease and every provider knew that hospice presented the best hope to meet Mr. Smith’s wish to return home. However, any attempts of discussing hospice only exacerbated his anxiety and dyspnea symptoms making conversation impossible.
Mr. Smith did have the wonderful gift of a truly loving son John who was his full time caregiver. When we met, John’s fatigue and sorrow were palpable. Deep dark circles surrounded his eyes. Dry wall dust and powdered cement covered his shorts and socks. It didn’t take long to realize how uncomfortable John was in the hospital environment surrounded by scrubs, dressed up physicians, and beeping machines. I had never met such a physically strong male made so uneasy by a setting where I felt comfortable. He often kept his eyes down, always spoke in a passive manner, and spoke softly. John had very little medical understanding, but he understood we could not improve his father’s condition and that it would only continue to worsen.
We had set up a care team meeting with John to discuss his father’s condition. As we reiterated the realities of his father’s disease and our recommendation of hospice, John broke into tears. When he stopped crying, he looked at the floor and said, “I want you to understand who my father was. He was the best, independent man I ever knew. He built his own house where his wife later died. He took care of her the whole time. He was a mason and taught me everything I know. He took me in when things weren’t going too hot for me……paused to catch his voice….. His arms were like this (holding his hands 6 inches apart) until he was diagnosed with this disease 4 years ago. He was throwing down his own 50 pound concrete blocks and mudding even though he was in his 70s. As he has gotten weaker, he has always found ways to stay independent. I just hate seeing him like this.” At this moment, I realized I had no idea of who Mr. Smith was, what he represented, or the life he had lived. I had only known this small sliver of his existence decimated by disease, and I realized then that there is just so much more to people than their diseases.
As I reflected on these experiences and others that I had as a third and fourth year medical student, I realized that to treat my patients holistically, I must improve how I learn about them and speak to them. With the majority of my training focusing on pathology, I recognized that learning these humanistic skills was my personal responsibility. So I began observing my residents and attending physicians to see who maintained a holistic and humanistic focus with patients during their busy days and how they did this. Watching them, I learned several lessons.
1. The first thing I learned was to sit down. Almost all meaningful personal conversations that I had as a fourth year occurred when I sat instead of standing up. It was amazing how a conversation dynamic changed with sitting.
2. Second, incorporating reflective statements during difficult conversations made sure patients felt listened to and ensured that I truly understood what they wanted to communicate. Reflective Statements are when the interviewer rephrases or paraphrases the patient’s comments and emotions. When Mr. Rodriguez would start some of our morning conversations bitter and angry, I found reflective phrases such as “It sounds like you are very frustrated that this has not healed as expected, and your goal is to return home as fast as possible” allowed us to name his emotion and address the deeper meaning. Sometimes my statements were incorrect, but it gave patients the space to clarify what they were actually feeling.
3. Third, I placed more emphasis on the social aspect of the H&P by asking large open ended questions like “Could you tell me a little about yourself? What are the most important things in your life? What are the difficult parts?” to provide the patient a small window where they could tell me about significant history not included in my pre-formed checklist. I then learned to incorporate important parts of the social history into my patient’s one liner to provide my team with more depth during patient presentations on rounds. For example, I would start Mr. Rodriguez’s history as “This is an 84 year old male with history of stage 4 lung cancer who is a retired CFO and single father who presents with a spontaneous pneumothorax…”.
Lastly, I try to remember that the small sliver of time where I am caring for them is only that, a sliver, and if I gave my patients the space, many would give me the privilege of understanding their fuller picture.
Joel Klas is a fourth year medical student at UC San Diego School of Medicine. He is one of 19 students nominated by his peers to the Gold Humanism Honor Society’s class of 2019.