I am so sorry I didn’t make this different for you

I am so sorry I didn’t make this different for youThe telephone message arrived in my EMR’s inbox. A patient’s daughter had called and wanted to ask some questions about her mother. Her mother, Louise (name changed), had died about two weeks before.

I hesitated before calling her, recalling her mother’s cancer course.

Louise had been diagnosed with cancer at a relatively young age, in her late 40s. She received curative chemotherapy and radiation. She made it through treatment without any major complications, and she rarely complained about side effects, even though I knew she was probably having some. She achieved a remission, but it only lasted about a year.

When her cancer recurred and spread, it did so with a vengeance. She developed widespread metastases to other organs. Palliative chemotherapy helped for only a few months. Despite chemotherapy, her cancer worsened.

I recalled sitting in the exam room with Louise. She was alone, as she always was, and she sat in a chair opposite me as I showed her the latest CT scan images. She held her body in perfect posture, back straight, hands folded in her lap. Her face was unreadable. She was thinner than usual, already losing weight due to the cancer.

I explained to her that it was time to focus on her quality of life and on symptom control. Given the pace of her cancer spread, more chemotherapy would not help. I had mentioned hospice to her before, when she first developed metastatic disease, but she was not ready then. This time, I strongly encouraged her to accept hospice services. She adamantly refused.

That refusal of hospice, to even consider the possibility of hospice, was just the first of many such refusals. Over the next several months, I saw her regularly to help manage symptoms as they arose. She continued to lose weight, her appetite went away, and she needed increasingly more narcotics to control her pain. Each time I saw her, I asked her if she was ready to hear more about hospice services. And each time, she shook her head no. She needed to be there for her daughters, to help them raise her grandchildren, she told me, and hospice would just get in the way. She just wanted to focus on her family.

“Please tell me why,” I said to her at one of our last visits. “What worries you about hospice?” I hated to force it upon her, but I knew that she could receive so many benefits from the service. As usual, she had come to the appointment by herself. I’d met her daughters in the beginning, but after a while, they stopped coming.

“Because having hospice means I’ll die,” she said bluntly.

Louise finally succumbed to her cancer at home, with her family nearby. She had accepted hospice about one week before she died. I remember signing the hospice orders and being relieved that she’d finally come around.

After my morning clinic, I called Louise’s daughter back. As the phone rang, I wondered if she needed a form signed, or whether she would express anger at me for not doing enough to help her mom. She picked up on the fifth ring.

“I am so, so sorry to hear about your mother’s passing,” I said.

“Thank you,” she said. She didn’t sound angry at all. I let out my breath, not realizing I had been holding it. “My sisters and I were wondering about something. This all happened so quickly. Did Mom know she was going to die? We think she had been keeping something from us.”

I hesitated. Did Louise keep the reality of her cancer from her children? Had she not told them her prognosis?

“What did your mom tell you about her cancer?” I asked, cautiously.

“She always told us she was doing great, that the chemotherapy was curing her,” she said. “We’d ask her about her appointments with Dr. Markham, and she would always say that you said she was doing wonderful. But she would never let us call you to ask questions. She told us you wouldn’t speak to us about it.”

Every time Louise declined my offer of hospice — so many times over the course of almost a year — she did it to keep her prognosis from her family. How did I not realize this was going on? Why did I not delve deeper? Why did I not ask more questions?

I explained to Louise’s daughter that her mother had, indeed, known for quite a while that she would die.

“I think your mom didn’t want you to worry,” I said. “She just wanted to spend time with you and her grandchildren. I think she was trying to be strong for you all.”

Louise went through the worst parts of her cancer alone, unable to share her worries or her fears with the people she loved. Her daughters, assuming she was doing well, never had the opportunity to say proper goodbyes or to imagine a future without their mother.

“I am so sorry,” I said to Louise’s daughter, one more time before we both hung up.

And what I meant was, “I am so sorry I didn’t make this different for you.”

Merry-Jennifer Markham is a hematologist-oncologist who blogs at her self-titled site Merry Jennifer Markham and can be found on Twitter @DrMarkham.  This article originally appeared in ASCO Connection,

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  • Suzi Q 38

    It is not your fault.
    This is how “Louise” wanted it.

  • 1SB

    As difficult as it is, you can’t make patients see things the way you think might be helpful to them. They have to see things the way that they see them, and they have a right to.