(published also online on 4/10/17 in The ASCO Post, under the title The Mystery of Grace. re-published here with permission of the editor).
The day after I told Nell she had seven metastases to her brain, she sent me flowers.
She was my patient; I was her oncologist. I had met her 1 year prior, when she was well into her cancer journey, stage IV breast cancer at diagnosis. I took over from her current oncologist, who was moving. At our first visit together, she grilled me without mercy. Her questions were insightful, and her demeanor was tough; I liked her immediately. I must have passed her test because she returned to see me again.
One hour was never enough time in the clinic. Her questions always had a twist I never thought of. I enjoyed our high-level conversations. She challenged me, but in a way that somehow never was unpleasant or difficult.
Yet each conversation would end in the same way; her fear would become more and more visible as she realized there was no question she could ask me that would change the answer I had to give to her ultimate question: there was yet no known cure. She would then change the subject, put on a bright air, give me a hug, and tell me she was ready to head back to the infusion rooom.
When she admitted to refractory nausea for over 1 month, with no correlation to her chemotherapy, my heart sank. I knew we had to repeat magnetic resonance imaging (MRI) of the brain immediately. I prayed for my clinical gut instinct to be wrong, but when my radiology colleague called me with the news, I was not surprised. Just as the answers to her questions were always the same no matter how she phrased them, the cancer was acting out its biology in her body relentlessly, no matter how much I wanted to stop it.
Of all the things I thought she might say, she caught me off guard by expressing that she was sorry I was in the position to have to tell her the bad news. Several members of our team were in tears, but she was not. We went through the options. She decided she would try whole-brain radiation therapy.
The next day the flowers arrived. I was at once awed and humbled by this gesture of grace.
There is no surprise ending to this story. Her performance status declined rapidly. It became all too clear there would be no more chances for chemotherapy. When I went to see her in the hospital, she was curled in the fetal position. I crouched down so I could be on eye level with her, and she grasped my hands. She smiled at me and told me she loved me. Once again, she caught me off my guard. I could not speak; I didn’t want to break down in front of her and her husband. I tried to smile back.
Once she was home, an unprecedented invitation was received in the clinic. She wanted to have a gathering to say goodbye. We were all invited. She wanted it to be a celebration.
I personally find the moment of goodbye with a patient, whether it be in the clinic or hospital, to be one of internal struggle. Perhaps there was a day in fellowship that I missed when this was taught. Whether the patient and their loved ones are ready for hospice and welcoming of the transition, or whether they are resistant and we reach the decision together only after many conversations, there comes the moment when the decision is made, the conversation is over, and it is time to leave the room. Often I feel awkward, as I am uncertain whether my patient realizes this is the last time we will see each other. I try to convey warmth and sincerity as well as some sort of human contact before leaving the room, whether a handshake, a hug, or a hand on the shoulder. There are other times when I can see that my patient does indeed realize we are saying our final goodbyes.
Recently, a very frail man insisted on standing from his wheelchair to shake my hand, look me in the eye, give me a hug, and express his thanks, despite having failed all chemotherapy we had tried for palliation. I found myself lacking any words I thought could possibly match the solemnity of the moment. I mumbled something about how it was always my privilege to be his doctor. When his wife leaned over to hug him, I took the moment to leave the room. I typically have thought that as important a role as we think we may have as someone’s oncologist, once we step away, we fade quickly from the picture.
But the invitation from Nell, as with all my interactions with her, challenged my way of thinking yet again. I will admit that I was afraid to go. I was afraid to step past the barrier of the end of treatment and enter the home realm—the barrier our systems have created that separates us from the home palliative care and hospice team. When I looked at the calendar, I felt both guilt and relief when I saw that I would be out of town on a prearranged family trip. I asked one of our nurses, who was in close touch with her husband, to let them know. I wrote a letter and asked the nurse to give it to her.
Not long after the gathering, her husband was in touch with the clinic. She was declining rapidly, he e-mailed. He was appreciative of the hospice team. He wrote about all the many places they had visited over the past several years, exotic places around the world, how grateful he was for all that they had been able to do.
She died late at night. We found out from the hospice nurse the next day. The following day, her husband e-mailed another message. He described her taking a final sigh of relief. He described his relief that her pain was gone and that she was no longer suffering.
My nurse told me that she was not fully cognizant on the day of the goodbye celebration. I do not know if she read the letter, or if her husband read it to her or he chose not to. A part of me worried that he might have been offended by the letter (should doctors directly write to patients about impending death?) and perhaps decided not to read it to her at all.
I wonder how many of my colleagues struggle with this—saying goodbye to a patient. Maybe some have figured out a way to express both the professional and spiritual aspects that no doubt we would all like to do in such moments. I do know that writing the letter helped provide some closure for me, which is typically missing. We are always moving on quickly to the next room, the next patient.
A palliative care physician colleague of mine, Dr. Erik Fromme, and I shared some e-mail correspondence recently about the remarkable people who, despite terrible illnesses and prognoses, exhibit a state of mind that manages to make those around them feel better. A person like Nell, who worries about her doctor’s feelings over her own, even when faced with catastrophic illness.
I have kept the card from the flowers on a shelf in my office. The hardest thing about those flowers was the feeling that I so little deserved them. I puzzled for a long time over what she felt when she sent them. She must have felt anger, fear, sadness—all normal reactions accompanying a devastating complication of cancer.
I eventually realized the flowers were a symbol. I think that she wanted to let me know that the news about the brain metastases had not taken away her inner grace, had not changed who she was. Although grace is a word that can have religious connotations, it also can mean a state of decency, honor, beauty, forgiveness. A gift of unmerited favor; the flowers were a gift of grace. A gift that I realize now I did not have to earn but could accept simply as she intended it.
In oncology, we encounter myriads of moments of grace in our practices every day, and they don’t leave us unchanged. I struggled with an ending to this narrative until I came across this passage by author Anne Lamott:
“I do not at all understand the mystery of grace—only that it meets us where we are but does not leave us where it found us.”1
1. Lamott A: Grace, in Traveling Mercies: Some Thoughts on Faith, p 143. New York, Random House, 1999.
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