This story actually begins years before I started practice in my rural community. It began when I was a 3rd year medical student. There was a phrase that I would occasionally hear from my attending and/or resident physicians when I was on my inpatient clinical rotations. Mostly I recall hearing this phrase on my surgery rotation where I had been assigned to the trauma surgery team at our local county hospital.
Anyone who works as a first responder (police, fire and ambulance), or has had medical or nursing training in a large county hospital will completely understand this setting. But, for most of the public, such an understanding would be truly foreign.
Large, urban, county hospitals usually have a designation as a Level I Trauma Service. This is the highest designation given to a hospital which has extensive equipment and staffing to handle any type of trauma. In a large city, there would be a wide variety of serious and often frightening cases that would come to a Level I Trauma hospital; for example; shootings, stabbings, rapes, assaults, motor vehicle accidents, drug overdoses, and any number of accidents (e.g. serious falls), and major medical emergencies including heart attacks and strokes.
Every case that we would receive through the emergency room received the highest standard of care available. We always had priority for any lab or X-ray needs, the blood bank was always on stand-by to provide necessary transfusions, and there were always operating rooms available for emergency surgeries. But, even with the best care, not every patient was destined to survive, as you can imagine given the severity of these types of cases.
Some patients died even as we were trying our best to save them. Others survived their emergency care, yet would die in the coming days from the severity of their injuries (major burns, massive trauma from an automobile accident, massive stroke or heart attack). Others would die from the predicable complications that were a result of their injuries, despite the fact that we were always checking for these to occur. The most common complications seemed to be overwhelming infection, continued hemorrhage, or major organ shutdown (kidney failure, liver failure, heart failure).
I consider myself to be a caring and compassionate individual, and I cared deeply about the welfare of our patients. I quickly learned that for those who were conscious, they appreciated a visit from one of their physicians (patients felt like the whole team consisted of physicians, even though some of us were still medical students), beyond the team rounds that were held every morning. I had the privilege of learning something about our patients’ lives and would share their hopes and fears. Ironically, because I would take the extra time to get to know many of our patients on a more personal level, my attending faculty surgeons would refer to me as the team’s “psychiatrist!” I know that they considered that reference to be a bit of an insult, but I considered it to be a compliment!
As we cared for these patients who were suffering the most serious complications from their emergent event, it would be clear that a specific patient was just not going to survive. I first heard the phrase while we would be making our rounds on those patients. The phrase was (and still is); “there is nothing more that we can do for this patient.”
To be fair to my trauma surgery teachers (attending and resident physicians), this phrase was used on other clinical services for terminally ill patients who were dying of their heart disease, or lung disease, or cancer. I am quite certain that during those years, I learned to use that phrase, too. I still felt a sense of sadness and loss when these patients died, but I was comforted knowing that we had done all that we could do, and perhaps my personal interactions added something positive at the end of their lives.
Later, as a resident physician in family medicine, working in a community hospital, we had a much less serious set of patients under our care, but we would still occasionally be dealing with a terminal situation. Once again, I recall an occasional attending/consulting physician telling the resident staff that “there was nothing more that could be done” for a specific patient. Sometimes, there is an underlying message that goes with that statement. The message is that we would be wasting resources and causing prolonged suffering for a patient and their family by trying to prevent the inevitable. I believe that is a valid concern that requires discussion with the family on a regular basis and, hopefully, being able to refer to an Advanced Directive from the patient themselves.
Now, allow me to jump forward to the time when I was practicing family medicine in a beautiful, small, rural community, so that I can share a patient’s story that taught me a most valuable lesson.
I want to tell you about Autumn (not her real name, of course), and I will not offer a fictionalized last name. I had heard quite a bit about Autumn during my first two years in this community. Although she was not a patient of mine (at least, not yet), many of my patients had told me about her. They would talk about the nature walks that she led through the forest in our area. She would teach about the various plants and creatures living in the forest and whether certain plants had any nutritional or medicinal value. I had patients who would much prefer an herbal remedy from Autumn, than a prescription for a pharmaceutical product from me!
I also had learned that Autumn lived by herself on a small farm that had a small orchard. Every spring she would plant an extensive garden and grow many vegetables and fruits that she could enjoy fresh, and that she would preserve (usually through canning or freeze drying) her bountiful produce so that she could enjoy those foods through the fall and winter, and into the next spring. And, she did collect edible products from the forest to augment her food supply and provide medicinal products.
I had been in my community a little over two years, when I was surprised to see Autumn’s name on my schedule. I knew that she wasn’t a proponent of “Western” medical care, and that made me more curious about the reason for her visit.
When we first met, in person, at that clinic visit, I believe that Autumn was about 53 years old. I introduced myself and shared that I already knew a bit about her, and how some of my patients really loved and appreciated her. And, I did ask about the reason for her visit (she hadn’t given a reason when making the appointment). She shared that she had heard good things about me, too, but she wasn’t going to come and see me until she felt fairly certain that I would be staying in this community. I reassured her that I was very happy here and had no plans to leave. She told me that she just wanted a basic check-up. She stated that she had gone through menopause the past year, and wanted to be sure that everything was okay. We did a general physical exam, including a breast and pelvic exam, along with a PAP smear (we didn’t have HPV testing in those days). I discussed with her the value of getting a screening mammogram and screening sigmoidoscopy (yes that is what we did before colonoscopy) given her age, but she declined those tests. She was willing to have some basic lab work.
Autumn was a vibrant and energetic 53 year old and her exam and lab tests were all normal. Neither she nor I were surprised by that. I did recommend that she return for annual exams (that is what we did in those days), and she did agree with that. She did invite me to join one of her nature walks, but they were always during the day on weekdays when I was in clinic. I regret that I was never was able to take advantage of that special opportunity.
Autumn faithfully returned for her check-ups the next three years, and every visit was the same. She was the healthiest 50+ year old that I knew. Every year I would offer her screening mammography and screening sigmoidoscopy, and she would politely decline. I enjoyed those visits as opportunities to get to know her better, and learn a little about the local herbs that she would collect for medicinal purposes. It helps to know what your patients are using besides what you recommend or prescribe.
Four years later, when Autumn, now 57 years old, came in for her annual exam, she actually had a complaint. She said that she was feeling great, but she had discovered a small, hard lump in her left breast. Everything on her exam and her lab work was normal, EXCEPT for the 1 centimeter diameter, hard, fixed lump in the upper outer quadrant of her left breast. There were no overlying skin changes and I could not feel any enlarged lymph nodes in her axilla (her armpit). I shared my concern that this could be an early cancer, and that I wanted to refer her for a mammogram and surgical consultation and likely a biopsy. Autumn thanked me for confirming her suspicions and stated that she did not want to do those things. Instead, she was going to use some herbal remedies, both topical and oral.
The next year, age 58, Autumn returned for her annual exam. I was saddened, but not surprised, to learn that her breast lump had not responded to her treatments and was now much bigger. She had also lost weight and complained of decreased energy and endurance. She could no longer work in her garden or conduct herb walks in the forest. Her neighbors were caring for her farm and helping her at home. On physical exam, she had lost 15 pounds since the prior visit. Her breast mass was now about 6 centimeters in diameter, very hard, and clearly fixed to underlying tissue (it was immobile). There were no overlying skin changes, but I could easily feel an enlarged, hard lymph node in her left axilla. I did not find any other enlarged lymph nodes and her liver was not enlarged. Once again, I recommended referral for a mammogram and surgical consultation (inside I was pleading for her to get these done). But, she remained consistent in her desire to avoid medical interventions.
Her next visit was only two months later because her breast lump was now eroding through the skin of her breast resulting in a foul smelling infection in that area. She had lost another 10 pounds and was looking very thin, almost gaunt; truly a walking shadow of the person that I had known in the past. She now had multiple enlarged lymph nodes in her axilla and above her clavicle (collar bone). For the first time, Autumn was asking me for medical assistance. She specifically wanted something to treat the skin infection, something to help with the pain she was having, and something to help her with the persistent nausea that prevented her from eating well. In today’s medical environment, Autumn would have been a candidate for hospice care; either at her own home, or in a care center. But, that wasn’t available in the early 1980’s in my rural area. Fortunately, there was a visiting nursing service in a larger community that was 20 miles away. They could arrange for home health care with an aide and twice weekly nursing visits. So, that is what we ordered. And, yes, I did prescribe topical treatments for the open wound on her breast, and prescriptions for her pain and nausea.
Sadly, yet predictably, Autumn’s health continued to rapidly decline. Over the next two months I would receive weekly reports from the visiting nursing service, and I was able to make a couple of house calls (yes, back then we did that for certain patients). The house calls allowed me to see Autumn in her own environment and meet the wonderful neighbors who were caring for her and her garden. Usually, these visits were needed to discuss changes in pain medication, or possibly other medical needs.
About a week after my last home visit with Autumn, our clinic received a phone call that I had been dreading for some time. One of her neighbors felt that I needed to see Autumn that day. She didn’t give a more specific reason, but pleaded with my receptionist to have me make another home. visit. I agreed to this request for a visit, but I would need to finish seeing those patients who were already scheduled to be seen in clinic that day. That was agreeable with the neighbor.
It was probably close to 6 pm when I had finished in clinic and got in my car to make the 3 mile drive out to Autumn’s farm. I was asking myself what could possibly be the reason for this urgent visit? I had just seen her a week ago, and I had not received any concerning news from the visiting nursing service. In the back of my mind, I started hearing an old phrase: there is nothing more that you can do!
This was becoming the longest 3-mile drive I had ever taken. The road took me through a beautiful, forested area that I had seen before, yet now barely noticed. In the dim evening light, I pulled into her property and parked my car in front of her small home (more like a cabin). As I got out of my car, I could see her beautiful garden and orchard alongside the house, and her neighbors beckoning me to come in.
I entered into her darkened living room where only a few candles were burning. There was a strong scent of some herbal incense in the air. Autumn was lying on her sofa, covered with blankets because she was easily chilled. I was motioned over to a chair that was placed near her head. As I was going to the chair, I could see her face. At that moment I remembered the strong and vibrant woman from our first meeting, and now I could only see a frail remnant of that beautiful person.
My heart was pounding and I felt uncomfortable because I didn’t know what to do. After all, there was nothing more to do. Those words kept repeating through my mind. I wanted to speak; but I didn’t really want to say those words (the phrase).
I sat down in the designated chair (my chair near her head), and I prepared to speak. Before I could open my mouth and try to get some words to come out, Autumn opened her eyes, looked at me, and held out her hand to me. I remember thinking that her eyes still had the same sparkle of life as when we first met, and they brought a strange beauty to that thin, pale face. Then, she spoke first. She said the words that continue to burn in my heart to this day. “Dr. Babitz, will you please hold my hand?”
I was stunned, but didn’t hesitate a second to reach out and take her hand. I sat there, holding hands with her for a few minutes, maybe 10 (I was not keeping time). We kept looking into each other’s eyes in a silent communication. I can tell you that those minutes were feeling like an eternity. In my mind I wondered if this is what prophets see when looking into the eyes of G_d.
Then, she let go of my hand, and in a soft and very tired voice, said, “thank you for coming to see me.”
I left her home with my eyes filling with tears. I had not wanted her or her neighbors to see me crying. My eyes stayed wet throughout that evening’s drive home. I was emotionally shaken and could not yet appreciate the power of the lesson that I had just been taught. Autumn passed away two days later.
Since caring for Autumn, I made a promise to myself. I will never use the phrase there is nothing more that I can do for you. Autumn taught that there is always something more.
In later years, this lesson finally came into focus. First, when I heard the phrase, “patients don’t care how much you know, until they know how much you care.” Then, I developed my own phrase that I could share with colleagues, or health professions students or medical residents; “you can pretend to know, you can pretend to care, but you cannot pretend to BE THERE.”
