Strengthening cancer care through communication

Two of the speakers called on healthcare professionals to discuss critical issues, such as palliative care and the cost of care, early in treatment. A third speaker offered a model for a more individualized approach to health care. The session concluded with two of Living Beyond Breast Cancer’s Hear My Voice graduates, Christine Hodgdon, co-founder of GRASP (Guiding Researchers and Advocates to Scientific Partnerships), and Stephanie Walker, RN, BECOME project director, Metastatic Breast Cancer Alliance, who highlighted the work being done by individual and organizational advocates on these and other metastatic breast cancer issues.

Incorporate palliative care early

Palliative care can improve quality of life for patients and families. Yet, it is often introduced late in illness, sometimes only as part of hospice. Tara Kaufman, MD, MSCE, a medical oncologist at University of Texas Health Austin, sees that as a missed opportunity.

Palliative care involves a team of specialists who help provide relief from the symptoms and stress of a serious illness. The team can include doctors, nurses, social workers, dietitians, and others. Research has demonstrated palliative care’s benefits to patients and families related to mood, symptom burden, time on treatment, less aggressive end-of-life care, and caregiver bereavement. For this reason, the American Society for Clinical Oncology recommends that patients with advanced cancer receive palliative care early in the disease course. Yet, many doctors continue to introduce palliative care later in illness, if at all.

Dr. Kaufman advises screening patients early to understand their needs and identify areas where they might benefit from support. She encourages doctors to try to learn more about their patients’ lives and families. She advises that they ask what they do for fun or where they find comfort, who the most important people in their lives are, and who will support them during treatment. Talking about palliative care early, as part of a team-based approach, normalizes it so it’s not just associated with a downward change in status or condition.

Later, perhaps during a scan review, a doctor might ask patients about their understanding of their situation, what it means for them, and what their goals are. Dr. Kaufman suggests trying to tailor recommendations to patient goals. She puts the onus on doctors to initiate these conversations and begin to build referral connections to call upon when needed.

Talk about cost of care

“We never tell patients about the potential financial toxicity of their treatment,” says Fumiko Chino, MD, a radiation oncologist at Memorial Sloan Kettering Cancer Center, who is on a mission to encourage oncologists to talk about the cost of care.

Financial toxicity describes problems that develop for patients related to the cost of medical care. It is common in cancer as treatment can cut into work time, bring added expenses like childcare or transportation, and last for many years. The topic is personal for Dr. Chino, who lost her husband to cancer at a young age. The costs they incurred during his treatment followed her for more than a decade.

Patients with significant financial problems report more anxiety and fatigue and are less likely to say that their quality of life is good. Financial struggles can have a direct impact on care. A study on which Dr. Chino is a coauthor found that 22% of patients did not fill prescriptions due to cost, and another 14% skipped doses to make medicines last longer. In this way, financial toxicity drives disparities in care.

Faced with high costs, people with cancer may use savings, borrow money, spend less on basics or leisure, or even declare bankruptcy. Cost can have an impact on a patient’s ability to enroll in clinical trials.

Financial toxicity can affect anyone, but research has found that Black people are more likely to be denied insurance and more than twice as likely to experience financial difficulty due to cancer. One in 20 Black or Latina women with early-stage breast cancer lost their home due to the financial impact of cancer treatment, according to a 2018 study published in Cancer.

Dr. Chino looks on financial toxicity as a disease that we can begin to prevent by educating patients and providers and being proactive. She suggests that providers start with conversations about cost. Cost conversations result in more referrals to financial counselors and minor adjustments that do not compromise care, such as switching to a less expensive medicine, changing tests, reducing the frequency of tests or appointments, or having a doctor appeal to an insurance company on the patient’s behalf.

These conversations also promote trust, a dominant theme at SABCS this year. When doctors fail to discuss potentially high costs with patients, they compromise trust, according to Dr. Chino. Medical schools can play a role and incorporate affordability into the curricula, so doctors are better able to address this topic with patients.

Treat the individual

Personalized care is another recurrent theme at SABCS this year, discussed frequently in sessions focused on health equity and disparities. The Advanced Breast Cancer (ABC) program at the University of Texas MD Anderson Cancer Center relies on the patient voice to steer treatment and comprehensive survivorship care for metastatic breast cancer.

The ABC program was created by patients for patients. The goal is to develop personalized therapy. One priority is to streamline how patients are triaged for clinical trials and genetic screening. The program incorporates psychosocial support, weekly educational webinars, peer mentoring, and multiple other enhancements based on patient input. Nurse practitioner Abbey Kaler, MS, ARPN, FNP-C, says the long-term goal is to create a model of best practices. Future plans include evaluating the success of the program.