Goals of care
|Photo by Jake Thacker on Unsplash|
It was the beginning of my intern year and I felt like an impostor. Facing new responsibilities in both the hospital and clinic, I was aware of my lack of experience when patients asked for my medical opinion. But as I began to see the same patients again and again in the clinic, “medicine” faded to the background of our interactions, while personal relationships came to the forefront. I learned what was important to them, what their goals and priorities were, and how they understood and dealt with their medical problems.
One afternoon I met Eleanor, an elderly, put-together, kind, and medically complex woman now entrusted to my care. Eleanor was accompanied by her daughter Sarah, and the two looked remarkably alike. Their haircuts and manicured fingernails mirrored each other. Our first appointment ran over its allotted time because of Eleanor’s many medical problems and the questions surrounding her care. We agreed to meet again. After several visits, I finally had an understanding of Eleanor’s medical conditions as well as what mattered to her as a person. She realized she was “slowing down a bit” and needed more help with medications and daily tasks. She moved to a new facility where she prized her social life, enjoying art and exercise classes. She visited with her daughter on the phone daily, and they spent time together at least once a week. Eleanor told me she was looking forward to a trip to Jerusalem; she had been saving and planning for years. But her medical problems soon derailed this goal.
One evening, Eleanor started to vomit and Sarah took her to the emergency department. She had developed a bowel obstruction. A tube was placed to decompress her stomach, and scans showed that her bowel had herniated through a defect in her abdominal wall. The surgical team recommended against an operation to fix this hernia as her bowel was viable and her symptoms were improving. After she was discharged, Eleanor suffered a series of setbacks, each requiring a new hospitalization: blood clots in her legs and lungs, another bowel obstruction, severe back and leg pain limiting her ability to walk, and worsened nausea and vomiting from pain medications. Each time we met in the clinic, she appeared older and more frail; the stress of caring for her mother was aging Sarah, too.
We decided to have an appointment dedicated to Eleanor’s goals of care. At age eighty-nine, she was still “full code.” Like many people, Eleanor and Sarah’s idea of “resuscitation” reflected what they had seen in movies and TV shows: a few chest compressions, and the patient was back on track. We talked about how this depiction was not realistic and that few elderly people survive a code. Eleanor and her daughter became tearful, as we all were forced to confront Eleanor’s mortality. I felt the tears well up in my eyes, too; I had become close to this pair after two years of clinic appointments and phone calls. Eleanor told us she had been preparing for death and “putting her affairs in order” so that her children would be “taken care of.” Still, she was conflicted. She was prepared but not ready to die—she still had her planned trip to Jerusalem. I let her know that our conversation was not meant to persuade her that we were “giving up,” but that if she decided on advanced directives that included a “Do Not Resuscitate” order, if her body died naturally, we would not try to restart her heart. She agreed, and we filled out the form that indicated her wishes.
As Eleanor continued to develop intermittent bowel obstructions thought to be caused by her hernia, it became important to her to have this repaired. But she had difficulty finding a surgeon who was willing to consider it: a long procedure requiring mesh in her abdominal wall, and a high-risk operation with general anesthesia given her multiple medical problems. She finally found a surgeon who was willing to operate, and a date for surgery was scheduled. On the very day of her scheduled operation, she developed chest pain. The procedure was canceled, and she was admitted to the hospital with a heart attack. That night, alone in the hospital, she had a massive stroke. When she became unresponsive a Code Blue was called, and Eleanor received chest compressions, electrical shocks, and medications to restart her heart. A breathing tube was placed into her airway and she was hooked up to a ventilator. She was transferred to the ICU, and her family was called. Sarah arrived at her bedside and asked that Eleanor be made comfortable and the breathing tube removed. She was there when her mother died.
As I read the hospital summary, tears welled up in my eyes. I felt that I had failed Eleanor. I had tried, through our clinic visit, to prevent what seemed a horrific death. I thought of Eleanor, alone in her final moments, and hoped she had been unaware of what was happening during the code.
A few days later, I called Sarah to express my condolences. “I’m so sorry,” I said. “I never wanted this to happen to Eleanor.” I braced myself, expecting to hear anger or blame in her reply.
“Dr. Grant, I appreciate your call. It’s OK,” she said. “Eleanor wanted this surgery. She understood the risks, but it was important for her to have this done. I have made peace with everything because I know it was her decision.”
We said our goodbyes, and she thanked me for being a part of Eleanor’s life; I did the same. I knew this would be the last time we spoke. I felt saddened, humbled, and uplifted at the great privilege of sharing such experiences with our patients and their families; being a part of something greater than ourselves. When I think back on Eleanor’s story, and so many other stories like hers, I call to mind a quote by Mark Manson:
Death scares us. And because it scares us, we avoid thinking about it, talking about it, sometimes even acknowledging it, even when it’s happening to someone close to us.
Yet, in a bizarre, backwards way, death is the light by which the shadow of all of life’s meaning is measured. Without death, everything would feel inconsequential, all experience arbitrary, all metrics and values suddenly zero.¹
- Manson, Mark. The Subtle Art of Not Giving A F*. 2nd ed. Harper; 2016.
LEAH GRANT, MD, is an internal medicine resident in Portland, Oregon who recently matched into an infectious diseases fellowship in Arizona. Outside of work, she enjoys spending time with her husband, hiking, reading, watching movies, and playing with her German shepherd puppy.
Winter 2021 | Sections | End of Life