Abstract
The Medical Situation
M
The Primary Care Physician
I became Ms. B's primary care provider one year after the myasthenia diagnosis. When I first met her in the middle of a busy clinic afternoon one month into my new practice, I scrambled to understand her medical history and identify her most pressing needs as she ably explained her recent steroid-induced hyperglycemia and anticoagulation-related gastrointestinal bleeding. Ms. B's remarkable perspective and calm approach to life reminded me that she was a wife and mother with unfortunate circumstances, not primarily a complex medical case. She had an infectious, positive attitude and a peaceful smile, even in the face of new onset back pain from an osteoporotic compression fracture.
Together we made plans to prevent complications and treat problems while trying to maintain her quality of life. When unstable housing forced her to get intravenous immunoglobulin (IVIG) treatments in a hotel room, we discussed how best to manage her increasingly complex medical and social situation.
She shared that decades before she had given birth to a baby with hypoplastic left heart syndrome and she had struggled with her decision to choose comfort measures over an experimental surgery. When she started feeling that her days were consumed with medical treatments, she felt assured that she had chosen a better alternative for her baby, and would make the decision for less aggressive care for herself one day. As a series of infections and complications prevented outpatient visits in the past six months of her life, we talked by phone and during social bedside visits. She had hope that each infection was treatable but expected that one day, she would know it was time to stop fighting and focus on her comfort.
The Medicine Intern
I met Ms. B as I prerounded five days after she became paralyzed. As I reflect on our time together, I admit that, at least initially, I thought of myself first. My standard intern-absorbing-a-new-patient-cohort stress was exacerbated by her medical complexity. It took me a day to truly realize that she faced life without her legs. Despite this ominous change, she seemed in high spirits, laughing at my early morning jokes, and engaging with the medical team. Although I selfishly thought I was expertly caring for her, I later realized she presented a strong light-hearted façade, so as not to burden her caregivers with her misery. Furthermore, at the news of her death, my initial reaction was to second guess myself, reviewing the medical facts to convince myself that I did not miss anything.
Medicine and medical training are stressful, sometimes leading to a view of glorified self-sacrifice and a “woe is me” mentality. In meeting and parting with Ms. B, my initial thoughts were for myself: my stress, my ability, and my reputation. Thankfully, I ultimately moved beyond myself and, I hope, cared for my patient. As a medicine intern with aspirations of becoming an oncologist, I will continue to immerse myself in sad cases, bad news, and death. It will no doubt take a personal toll. However, Ms. B will serve as a reminder that no matter my own stress or fears, my patient's burden is greater, and they would gladly trade places with me.
The ICU Physician
Ms. B was brought to the ICU emergently for a change in her level of consciousness and signs of clinical deterioration. Once awake, we could converse with her and found a feisty woman who was fearful in the face of this ongoing deterioration. She told me she didn't want to die, even though her life was not one she would have chosen for anyone. Her chronic pain and dependence on others made her feel helpless, but she shared that she had an adequate quality of life. After discussing with Ms. B, we performed an MRI and a lumber puncture. She reported some pain, but appeared to be stable after the procedure. She died six hours later.
The lessons she taught the ICU team in the brief 48 hours she was in our care was that no matter how dire your clinical condition is, hope can overcome fear. Her attitude of positivity and acceptance of her deterioration and possible demise was humbling. I always ask residents to find out a personal fact about each patient they care for in the ICU, in the hope that this will foster a bond between the resident and the patient that will go beyond medical care.
The Palliative Care Consultant
It was like watching a train wreck in slow motion. Because her medical course was couched in the language of potential reversibility, we could not get past “maybe it will work.” Much of our time spent together was just listening to her talk—about her fear, her family, her sadness, and her loneliness. When I probed for her medical understanding, it became clear that not only did she understand her situation, but also she knew how dire it was, and she was terrified. I shared my fear that some of the medical interventions we discussed, like CPR, would not be effective. She would look at me with eyes swollen from chronic steroids and fear in her voice—“I don't want to talk about it, I just can't.” As I continued discussions with the medical team that changed every few weeks, it became clear that Ms. B would not volunteer medical boundaries and the medical team would not impose them. As she moved from the medical floor to the ICU, changing teams and providers, week after week, I thought maybe I could at least help the teams see glimpses of the person that I saw.
When I found out she died, my heart sank. We had both stopped hoping she could get better, we just wished she would stop getting worse. As I saw this incredibly strong-spirited but medically fragile woman get more and more medically and emotionally brittle, I came to hope that we could provide her a comfortable death. I hoped that we would have time to name her clinical decline in absolute terms so we could help her prepare, that we could all agree that she was dying so we could help her move forward. I hoped that we would have time for her to talk to her family and for her to have some peace before she died. I hoped that she would not abruptly decline and endure futile CPR. And when she died in exactly the way I feared, I felt that I failed her.
The Chaplain
I was introduced to Ms. B by the palliative care physician in the hope that I could establish trust and offer spiritual space for a different kind of lament. After some guarded conversation, Ms. B slowly shared her pain that went well beyond the physical. She was not into “putting on a brave face” nor was she “looking on the bright side.” Ms. B expressed herself with sarcasm, angry gestures, cussing, and tearful story after tearful story. Instead of filling the silence between sobs with words, I held her hand, wore my emotions on my face, and gave her the permission to cry out. And she did. She also shared her artistic flair, her passion for painting, and teaching her grandkids. At the end, I thanked her for trusting me with her pain and passion, and though I could not disappear any of the wounds, I promised that the chaplain would “step in the shit with her” as often as she wanted. She laughed.
The last time I saw Ms. B, she ended our conversation with as close to a prayer request as we ever got: “If you talk to the man upstairs, make sure he knows I'm not ready to go be with my dad yet.” She died a week later. I don't know what that last week was like for Ms. B, and I don't know whether she was ready to be with her dad. But I believe our connection helped Ms. B with the kind of hope that emerges from sharing one's full vibrancy, cuss words and all, to name and get through the unbearable.