Living Life Her Own Way: Making the Case for a Greater Presence of Palliative Care in Oncology
“I have the most deadly form of breast cancer, and it will eventually kill me…,” said Amy Berman about her ongoing 18-month survival with Stage IV inflammatory breast cancer. “I’m not looking for a win to this battle. There isn’t a cure. I’m fighting to hold on to my quality of life.”
Nurse, health foundation executive, and blogger Amy Berman spoke at the April 12 Health Affairs briefing, which explored a number of new research findings about the value, cost, and quality of cancer care. Amy Berman chose a palliative approach to her incurable illness instead of a specialist’s recommendation for intensive chemotherapy, radiation, and a mastectomy, followed by more chemotherapy. Although she admitted that a few months of added life might come with rounds of radiation and chemotherapy, she questioned the emotional and physical costs.
Both at the Health Affairs briefing and in her journal article (“Living Life In My Own Way—And Dying That Way As Well,” Health Affairs. April 2012. Vol. 31, No. 4, p. 871), Ms. Berman called on the medical community to provide information to their cancer patients about the benefits of a palliative approach to care, which entails a focus on pain, symptoms, the needs of the family, and the ability to function at all ages and all stages of life.
“It’s about providing the best possible quality of life, whether that means offering a cure, minimizing the burden of a chronic disease, or, as in my situation, focusing on maximizing comfort,” she noted. “It’s a kindler, gentler approach to care that many people don’t know exists, but would surely embrace if they knew about it and it were made available to them.”
The good news is that some of the barriers to the integration of palliative care into oncology are starting to break down with today’s increased attention to survivorship issues, new educational initiatives in palliative care for physicians, and quality initiatives to evaluate how palliative care is provided. Still, as renowned palliative medicine specialist Jamie H. Von Roenn, MD, said in her recent Oncology Issues interview, the ideal model for the provision of palliative care in the outpatient setting is yet to be developed. For her, successful integration of palliative care into oncology care must include regular symptom assessment and screening, pain control, and absence of aggressive care for patients with advanced disease.
Both Dr. Von Roenn and Amy Berman agree that palliative care must highlight the importance of personal goals, which will lead to greater understanding about how treatment might be tailored.
“Each patient deserves to understand the diagnosis, the probable course of his or her disease, and the likely timetable,” Ms. Berman noted in her Health Affairs article. “Each deserves to be asked about personal goals. Each deserves to be an informed participant and help decide about treatment options.”
Will creating a Medicare benefit that pays physicians to have end-of-life discussions with their patients lead down a slippery path to care rationing by the government? “That makes absolutely no sense,” Ms. Berman said. “Such conversations are essential. Without them, patients have no control over crucial decisions that deeply affect their lives. What patients really need to be wary of are rationed information and rationed decisions.”
She is wary of any attempt for quality of life to be decided or rationed by somebody else, and she is a passionate advocate for allowing patients some control about how their lives will end.
“Our nation’s healthcare delivery system still defaults to aggressive treatment for all illnesses. If patients knew the true benefits—and true drawbacks—would that be their choice? Or would they go the palliative route instead?”
Ms. Berman has decided not to wage war with a disease that can’t be cured. She and her doctors are focusing on treatment that optimizes how she functions and addresses her symptoms.
So far, so good. We wish her well.