Weighing Cancer Treatment Choices at the End of Life

Care Partner Reflects on the Decision of Whether to Pursue Treatment

On a spring day in Savannah, Georgia, a tiny gray-haired woman alighted from an SUV in front of my house. It was March 2016. A few months earlier, I had been scrolling through Facebook when I came across a Today Show story about Norma Jean Bauerschmidt, a 90-year-old woman who was diagnosed with uterine cancer but decided not to pursue treatment. She opted out of surgery, radiation, and chemotherapy and opted into a bucket list RV trip with her son and daughter-in-law. They dubbed the adventure Driving Miss Norma.

The story fascinated me. As I read it, I thought back to my mom’s nine-year battle with breast cancer. Even in the last months of her life, in 2005, when she reluctantly agreed to a consult with a palliative care physician, my mom refused to stop treatment. To her, that was the equivalent of giving up, and the brave woman who served as an Army nurse in Vietnam was not a quitter. But if she had chosen that route, if she had “given up,” how different could those last few months of her life have been? Could we have taken her on a road trip? Could she have seen more sunsets and fewer hospital corridors? As her care partner, I supported her decision. As her daughter, I began to wonder if I should have encouraged her to consider a different path.

I started following Miss Norma on Facebook and cheered her on from afar as she visited national parks, rode a horse for the first time, went up in a hot air balloon, and inspired millions with her joie de vivre. When I saw that she was heading toward Georgia, I reached out to her son and invited them to a barbecue at our house. It was a going-away party as my family and I embarked on our own RV adventure, so it seemed fitting to invite Miss Norma and her family. They never responded to my email, but suddenly there they were in our front yard: Miss Norma, her son, Tim Bauerschmidt, her daughter-in-law, Ramie Liddle, and their standard poodle, Ringo.

“I’m 90 years old. I want to have some fun,” Miss Norma said, recalling the conversation months earlier when she told her doctor that she would not be spending the precious time she had left in a hospital bed.

The Importance of Shared Decision-Making in Cancer Care

The biggest lesson I learned from Miss Norma is the importance of participating in your own health care decisions. Your doctor will recommend what they think is best, but you only have one life, and it is critically important to be your own best advocate. Ask questions, get a second opinion, and make sure you understand your options.

I have a much better grasp now of patient options in cancer care and the importance of self-advocacy than I did as a freshman in college when my mom was diagnosed. If I had the chance to do it over again, these are some of the questions I would encourage her to ask:

• Do I need to start treatment right away?

• What treatment do you recommend, and why?

• What are the risks?

• What are the side effects?

• How long will the treatment last?

• How will we know the treatment is working?

• Is it curative?

• What changes should I expect in my daily life?

• What is the best way for my family and friends to support me?

• If I choose not to pursue treatment, what should I expect?

If you are deciding to have cancer treatment and which treatment option to choose, add additional questions specific to your interests and lifestyle. Are you a cyclist? Ask how treatment might affect your ability to ride long distances. Are you on a special meal plan? Ask what dietary changes you might have to consider. Do you have young children at home? Ask about treatment-related fatigue so you know if you should plan for child care.

When Miss Norma told her doctor that treatment was not the right path for her at that point in her life, he supported her decision. Ramie shared his response on her Miss Norma blog:

“As doctors, we see what cancer treatment looks like every day: ICU, nursing homes, awful side effects. Honestly, there is no guarantee she will survive the initial surgery to remove the mass. You are doing exactly what I would want to do in this situation. I'd want to be in that motorhome. Have a fantastic trip!”

Healthcare Decision Making: What is Right for You?

After 14 months, 13,000 miles, 32 states, and too many new friends and adventures to count, Miss Norma passed away on September 30, 2016, at the age of 91. She spent her last days living on her own terms. For her, not pursuing treatment was the right decision.

My mom also spent her last days living on her own terms, even though those terms were very different than Miss Norma’s. My mom didn’t dream of traveling the country in an RV. She needed to know that she never stopped fighting and she eked out every possible breath on this earth, even if that meant taking those breaths from a hospital bed. For her, continuing treatment was the right decision.

Whatever decision you make — to have treatment, to not have treatment, to stop and switch to a different treatment, to enroll in a clinical trial — just make sure you’re living life on your own terms. You are your own best advocate.

To learn more about Miss Norma and her adventures, you can check out the book Driving Miss Norma: One Family’s Journey Saying ‘Yes’ to Living.