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Cancer Care Chronicles
May 20, 2021

Accompanying Patients in the Time of COVID-19

Author Affiliations
  • 1Dana-Farber Cancer Institute, Boston, Massachusetts
  • 2Harvard Medical School, Boston, Massachusetts
JAMA Oncol. 2021;7(7):971-972. doi:10.1001/jamaoncol.2021.1311

Attention is the rarest and purest form of generosity.

Simone Weil1

The Discussion

On a late autumn afternoon early in the second wave of the COVID-19 pandemic, I found myself masked and eye-shielded in a darkened, crowded room on our inpatient palliative care service. Karen, a woman in her 60s, was lying in bed trying to find a position to reduce the pressure on her back where recurrent lung cancer was attacking her chest wall. She managed her patient-controlled analgesia carefully; she wanted to be alert for this moment.

I stood with the palliative care attending physician at the foot of the bed in the tiny room. The social worker and another palliative care practitioner held up 2 iPads and a cell phone. Faces familiar to the patient—her husband, daughter, and closest friend—filled the screens. There were no more options left for treating Karen’s horrific cancer, and we were there to clarify her preferences for further care.

When I had first met Karen a year ago, she had said almost nothing during the initial examination; she seemed too overwhelmed to speak. But now, she guided usher care team and the relatives on the screens—through the goals of care discussion. Having adjusted her pain medication so that the pain was just bearable, Karen listened as I described potential options for further treatment and concluded that none had any real chance of benefitting her. Then, she spoke to her loved ones with empathy and kindness and firmly announced that she was ready for hospice. Karen’s feelings and preferences—not anyone else’s—were at the forefront of this discussion. She went home the next day. We spoke once more, via a video call a week later. Karen was in bed, her family at her side. “See, Doc,” she told me, “I can still lay down new memories, just not extravagant ones.” She died 3 days later.

How is it that Karen became so prepared for this conversation? I could not help thinking about how much she had changed over the course of her illness.

The First Meeting

Karen and I met a year ago. When I entered the examination room in the lung cancer unit, I found her lying in the fetal position on the examining table. Her husband and daughter stood by helplessly. Karen was in agony. Flank pain had inexorably crept up on her during the past few months, finally leading her to visit her primary care physician. Results of imaging showed a small lung mass and a bulky metastasis eroding the lower rib cage. A biopsy specimen was positive for metastatic lung cancer, her husband told me, and she was here for treatment. She was willing to try anything.

I sat down at the computer screen—a momentary reprieve from looking at the sad scene—and reviewed the electronic health record. Results of the biopsy had shown adenocarcinoma with a highly aggressive molecular signature. I looked at the computed tomography images and tried to mask my shock at the extent of the local damage from the metastasis and how close the mass was to her spinal cord.

During this visit, Karen’s husband and daughter spoke for her. They told me that she was the most vital person they knew. They called her the “camp counselor” for her ability to manage the family, to organize anything. Her energy and love of life were boundless. She was the main caregiver for a disabled son and had managed to create a meaningful life for him. She helped her husband with his business and managed their home, as well as their lakeside “camp house” in Maine. Karen’s body language during this first visit hinted at her frustration; she did not like being described in the third person. Yet, she appeared too overwhelmed to speak.

During the ensuing months, we tried everything in an attempt to get Karen back on her feet. She received urgent radiation therapy to the chest wall mass, then first-, second-, and third-line chemotherapy, and further radiation therapy. For brief, teasing moments, she felt almost back to her old self. She planned and then celebrated her daughter’s wedding. She managed a few excursions to the Maine camp. But by late autumn, the cancer was growing again, and treatment options evaporated. Karen finally agreed to hospitalization to try to better manage the pain so that she might resume the fight against the cancer. Fortunately, a bed was available on a highly specialized palliative care unit. That is how we found ourselves in the crowded hospital room, in the middle of the pandemic, preparing for the goals of care discussion.

COVID-19 and Cancer Care

When COVID-19 arrived, Karen’s husband was no longer permitted to accompany her to the appointments. During long days of testing, evaluation, and treatment, he was relegated to the dark recesses of a large underground parking lot. When Karen and I sat down to review results of imaging scans, she would call her husband on his cell phone so that he could hear the results. Cell phone reception in the garage was poor, often making the effort futile. She stopped trying after the first few visits.

As we talked alone in the examining room, both of us behind masks like conspirators, Karen began to share her hopes and concerns in ways that she had not when her husband or daughter accompanied her. She was most worried about her disabled son. She understood that she was the rock of the family, and that the family had always looked to her in difficult times. Keeping her spirits up over the past months, she admitted, had sometimes been a Herculean effort for her, and now she was tired. But she could not stop fighting. That was why she was willing to sign up for unproven clinical trials and to endure harsh adverse effects. She was not afraid to die, but she was terrified of the prospect of abandoning her family, and of experiencing the level of pain that had heralded the cancer diagnosis.

Over the next few months, I grew to know Karen to a degree that was unusual for me. She came to know me better as well; once during a visit, Karen noticed a cervical collar hidden in my briefcase and asked if I was okay. My relationships with other patients across my oncology practice began to change in similar ways. Conversations became deeper, richer, and unencumbered by the need to be attuned to others in the room.

Before COVID-19, family members were nearly always present at patient visits; they were welcome advocates, providing emotional support and a second set of ears to catalog the discussion. But looking back now, I also recognize that there were times when loved ones’ presence may have inhibited the patient from speaking freely. I recall how patients sometimes deferred to family members, letting their own voices be overpowered by others. Now, in the middle of the pandemic that none of us foresaw, I find myself settling into a role that I had not openly acknowledged in the past, but that I believe has been at the core of my practice of medicine over a long career. Amrapali Maitra describes this role in her account of providing primary care during COVID-19, “Medicine is accompaniment—bearing others’ sorrow, walking the bumpy path alongside them.”2 COVID-19 has reminded me of a fundamental but easily overlooked responsibility of a physician: to be truly present with patients.

Finding Presence

Maitra’s metaphor of medicine as accompaniment2 is reminiscent of the late French philosopher and ascetic, Simone Weil, who wrote, “The love of our neighbor in all its fullness simply means being able to say to him, ‘What are you going through [quel est donc ton tourment]?’”3 This is the very question I felt better able to ask Karen 1-on-1, and the very question she extended to me in turn when she asked about my well-being. Weil’s need to understand the suffering of her fellow human led to her extreme acts of self-abnegation, becoming a factory worker and a farm laborer to appreciate the brutality of industrial and agricultural workplaces and refusing to sleep on a bed because others had to sleep on a cold floor. She ended her life ambiguously at the age of 34, wasting away after refusing to eat. Weil took empathy to a self-destructive extreme. Still, the basic principle that we must do our best to attend to the suffering of others remains relevant for us today.

Karen’s story raises an uncomfortable question: Has the exclusion of family members from the examination room during the pandemic had an unintended benefit of helping to foster deeper, more meaningful relationships between physician and patient? Prior to the pandemic, the only opportunity for a candid exchange between patient and practitioner was when the family briefly exited the room during the physical examination. Once the pandemic is controlled and we get back to business as usual, will there be a way to preserve the 1-on-1 time that allowed Karen to find her own voice? This is a question worthy of a larger conversation.

Perhaps the importance of attentiveness becomes clarified during crises. The pandemic has created mayhem and disrupted the way that we practice medicine. It has done immeasurable harm. But it has also provided opportunities for self-reflection for those of us ministering to patients. It has reminded me of the need to cultivate full presence, no matter what conditions are present. Francis Peabody, who lived through the influenza pandemic a century ago and who battled his own cancer wrote, “One of the essential qualities of the clinician is interest in humanity.”4 Karen invited me to accompany her journey on a difficult and painful path, and she greatly enriched my humanity along the way.

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Article Information

Corresponding Author: Joseph O. Jacobson, MD, MSc, Dana-Farber Cancer Institute, Dana 1018, 450 Brookline Ave, Boston, MA 02215 (joseph_jacobson@dfci.harvard.edu).

Published Online: May 20, 2021. doi:10.1001/jamaoncol.2021.1311

Conflict of Interest Disclosures: None reported.

Additional Contributions: We thank the patient’s husband for granting permission to publish this information.

References
1.
Pétrement  S.  Simone Weil: a life. Letter to Joë Bousquet, April 13, 1942. Pantheon; 1976.
2.
Maitra  A.  Holding up.   N Engl J Med. 2020;383(26):2498-2499. doi:10.1056/NEJMp2025395 PubMedGoogle ScholarCrossref
3.
Weil  S.  Waiting for God. Harper & Row; 1951.
4.
Peabody  FW.  The care of the patient.   JAMA. 1927;88(12):877-882. doi:10.1001/jama.1927.02680380001001PubMedGoogle ScholarCrossref
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