by Tory Zellick
February 13, 2013
I am no stranger to the quantity-versus-quality of life debate. When my mother was diagnosed with Stage IV metastatic breast cancer, my family quickly learned to play the game of weighing options and picking treatments, according to a risk/benefit analysis. We always took into account whether a given treatment would improve my mother’s comfort and enjoyment, sustain my mother’s life as-is or compromise what time she had left. For the most part, we opted for palliative care treatments that maintained my mother’s quality of life while potentially extending her time with us.
Amy Berman, senior program officer at the John A. Hartford Foundation, understands this choice very well. At 51, she too was diagnosed with stage IV metastatic breast cancer — in her case, after finding a rough, red spot on her breast. As most women in her situation would do, Berman contacted her general practitioner and had a mammogram, leading to a biopsy, which in turn confirmed the diagnosis of inflammatory breast cancer.
Knowing that a stage IV diagnosis is a terminal one, Berman chose to find treatment options with the least amount of side effects and, therefore, negative impact on her life. Having watched her own grandmother suffer a long and debilitating battle with Alzheimer’s, Berman was clear about her path forward: “I saw what it was like to have a long life that was not a good life,” she recalls. “I wanted to have as much quality of life as possible and didn’t want to go to battle if there was no reason to go to battle.”
In both Berman’s and my mother’s cases, the specialists involved recommended very aggressive treatments, with no guarantee of improving or sustaining life. “Healthcare will automatically be aggressive,” says Berman, “unless you state there is something you do not want done, or unless you tell [medical staff] you want to focus on quality of life.”
Many healthcare professionals, she explains, do not realize that the let’s-throw-everything-at-it approach can have a downside on one’s health and make that option a poor choice. “So often,” she notes, “we are so focused on the disease, that we forget to focus on the person.”
By the time she was diagnosed with cancer, Berman already had spoken with her family about what she would choose in the event of a chronic illness. Braced for and respecting her wishes, Berman’s family immediately supported her decision to opt against invasive treatments — including mastectomy, radiation and chemotherapy. Berman’s daughter even agreed it was “a no-brainer” to proceed in palliative mode, to do everything possible to support Berman’s quality of life, instead of going through the agony of trying to cure an incurable disease.
Between conventional medicine, clinical trials and complementary and alternative medicine, treatment options are ever-expanding. Against this backdrop of possibilities, Berman’s mantra rings true: “There are no wrong decisions, only informed decisions.” Ask questions, get the facts and make the best decision for you, Berman advises: Ask yourself what you want and what you do not want, then find out exactly what will happen to you while undergoing treatment:
• How likely is it that you will receive benefits from a given treatment?
• What are the probable side effects of this treatment?
• What will life be like during and after treatment?
• What are the costs: financially, emotionally and physically?
Although some friends and family members were confused and upset by my mother’s decision to choose a less conventional route, I always respected her thought process, thorough evaluation, and her ultimate decision to maintain her quality of life, despite other people’s accusations of “throwing in the towel.”
Similarly, “people may think I have given up or I don’t want to live,” Berman says. “I want to live as long as possible, as long as I am able to feel well for as long as possible.
“My primary goal,” she concludes, “is to really maintain what I have, and not lose that.”