Oncology Rounds

Where cancer patients are feeling the gaps in your Covid-19 communication

by Mallory Kirby

The novel coronavirus pandemic drove cancer programs to put in place operational and clinical changes to manage their patients' risk of exposure to Covid-19—but little is known about the patient perspective. How comfortable are patients with their care team’s decisions surrounding the pandemic, and are they satisfied with cancer program's communication in a time of so much uncertainty?

To find out, the Oncology Roundtable interviewed a 57-year-old in the mid-Atlantic in active treatment for a recurrence of breast cancer. Read on for my interview with the patient about her experience receiving chemotherapy during the Covid-19 pandemic, and three takeaways from our conversation on how to improve the patient experience during Covid-19.

Read the 3 lessons from our conversation

The patient's cancer diagnoses and treatment history

The patient, who I'll refer to using the pseudonym Diane, received her first diagnosis more than a year ago. "I was Stage 1A, so it was very early," she said. "It was very small, and it was HR+/PR+/HER2-. They encouraged me to do a lumpectomy and radiation, but I opted not to go that route and I did a left mastectomy with immediate reconstruction."

In December 2019, Diane received a diagnostic mammogram on her right side. Her radiologist said she needed an ultrasound. Diane underwent a biopsy, which detected cancer. "I was diagnosed for the second time the first week of January," she said. "A biopsy … identified it as cancer that was ER+, but I didn't get any HER2 status because they didn't have enough tissue."

Diane scheduled her surgery for Feb. 20, which brought back results that her cancer was HER2+. According to Diane, who finished her second infusion of chemotherapy on April 6, she is now Stage 1C, which is "a little bit bigger than my other cancer and a lot more aggressive."

In her own words: One patient's experience navigating cancer care amid Covid-19

Question: Hi Diane. Thank you for taking the time to chat with us today. I'd love to start by hearing about how your treatment plan changed as the situation with Covid-19 became more severe.

Diane: I got my first chemo treatment as Covid-19 cases were starting to pick up across the United States. I didn't want to wait around not knowing which services the coronavirus would shut down, so I asked if I could start my first infusion without a port. I wanted to feel like I was in the pipeline for active treatment because I figured they wouldn't close the pipeline if I was already in it.

They ended up canceling my port installation—which was originally scheduled for April 6, the morning of my second infusion—because of the virus. Then, they called me to reschedule for April 2.

By that point, a couple things had changed. For example, they sent me to an interventional radiologist who performed the procedure—not in an OR, but in a smaller surgical room at the hospital with local anesthesia.

And of course, the hospital didn't allow my husband to be there for the second infusion. My husband came to my first infusion, which lasted seven hours. I had a reaction to one of the drugs during my first infusion, so thank goodness my husband was sitting right there with me and could call a nurse over.

Everything went well with my second infusion—except, of course, it felt a little lonely.

How 55 cancer programs are treating patients (and keeping them safe) amid Covid-19

Q: Do you feel like your providers were clear about the changes you should expect, or the precautions in place against Covid-19?

Diane: I happened to find out that they had canceled my port installation when I called the symptom management line. At some point, as we talked through things, they said, "Oh, and all the surgeries have been canceled because they're nonessential." I responded, "Oh, OK."

It was kind of a roundabout way to find out, but I knew they were just trying to figure things out.

They let me know they were handling nonessential procedures on a case-by-case basis. But I didn't officially know they had canceled my appointment until they called later to reschedule my appointment.

From talking with different people at the cancer center, I learned they wouldn't allow visitors. Plus, I also found some information on MyChart. But they didn't call and tell me this ahead of time.

Q: How does your experience of receiving active treatment in the midst of a pandemic compare to your previous experience with cancer care? Do you wish your hospital was doing anything differently?

Diane: I think everybody is doing the best they can. Everyone's got their masks on and is trying to work with the PPE and stuff, but having enough PPE is still obviously a problem across the country. It's a tough business to be in these days.

3 lessons from our conversation

My conversation with Diane was insightful, and it highlighted three lessons cancer programs should take to heart to improve the patient experience during these uncertain times:

  • Develop a system to communicate changes. Cancer programs need a systematic and reliable way to communicate treatment and policy changes to patients. We were surprised (and concerned!) to hear that Diane only learned about her port placement getting canceled because she had called the system herself. 

  • Communicate with empathy. Providers need to show their patients they understand how stressful or scary changes due to coronavirus (such as not having your family with you) can be. Patients understand providers are doing your best, but they still appreciate having their concerns acknowledged.

  • Acknowledge your staff's hard work. Cancer programs need to make sure their staff know their efforts aren't going unnoticed. Diane mentioned her gratitude for the nurses at her infusion center who organized a drive for homemade cloth masks for any patient interested. Cancer patients appreciate the great lengths to providers are going to keep them safe, so those wins should be shared with teams on a regular basis.

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