Treating the Whole Person in Cancer Care: Addressing Comprehensive Services

ACCC logo | Image credit: ACCC

Krista Nelson, MSW, LCSW, OSW-C, FAOSW, became president of the Association of Cancer Care Centers (ACCC) in 2021 as the world emerged from the global pandemic. Her presidency was dominated by issues such as staff shortages and burnout, which remain a priority.

On Thursday, at ACCC’s 50th Annual Meeting & Cancer Center Business Summit, Nelson, who is the manager for supportive care at Providence Cancer Institute, led a discussion on a challenge that predates the pandemic but has perhaps become more urgent: how to meet patients’ needs beyond getting rid of the cancer or managing the nausea and other adverse events.

When a person has cancer, Nelson said, nothing is the same, and those needs must be addressed.

Krista Nelson, MSW, LCSW, OSW-C, FAOSW | Image credit: Tom Jordan

She described a patient who had received top-line therapies for her tumor. “Particular attention was paid to her molecular and genetic data,” Nelson said. “Radiation was expertly calibrated. From a medical perspective, everything was perfect.”

Yet, the woman was in tears. She did not feel like herself; she felt disconnected from her partner, and she wasn’t exercising like she once did. “I know we’ve all seen this scenario,” Nelson said. “We have to change what the standard of care is. … And some of you might not even know where to start.”

To gain insights, Nelson had assembled a panel with experts on navigation, advocacy, sexual health, LGBTQ+ issues, exercise, and mental health.

Standards, billing codes for patient navigation. Jennifer Bires, MSW, LCSW, OSW-C, executive director, Life With Cancer and Patient Experience at Inova Health System, described the revolution in patient navigation that has occurred in recent years, with the development of professional standards for oncology navigation and the recently published Medicare billing codes, which allow for reimbursement outside of a payment model.

Bires noted that while many navigators are nurses or social workers, some are non-clinical staff. Navigators do many different things, from helping with scheduling to advising patients on issues with financial toxicity. The mix of different types of navigators is a good thing, she said, because it allows cancer centers to pair patients with the type of assistance they need—and it allows navigators to work at the top of their license. Standards were developed by navigators, she noted, and new articles on the topic are being published every day.

“Any time we do something, we want to be sure we’re enhancing the quality,” she said. “Using these these standards and these competencies…can ensure that your navigators are really operating within the standards that we're putting in place, to make sure that people are providing the care that patients need.”

She said having new standards and billing codes represents the culmination of the vision of Harold Freeman, MD, the Harlem physician who developed the first cancer care navigation program in the 1960s.

Clearly, idea of navigation is not new. “But what is new is the energy and excitement around navigation,” Bires said. “If you're paying attention to what's going on in health care systems, people are talking about navigation in the way that they never have before…. They're paying attention because they know navigation works. So, while it's not something new, we have momentum.”

The role of advocacy. By the time the session began, Nicole Tapay, JD, had already had a full day. As ACCC’s director of Cancer Care Delivery and Health Policy, she had gathered members that morning for the group’s first day on Capitol Hill since the pandemic. For her, advocacy is personal—her mother was diagnosed with ovarian cancer when Tapay was a young woman about to be married. Since her father was a physician, navigating the clinical decisions was not the issue. But helping her mother figure out the “life” part was an eye-opener for Tapay, who contacted the American Cancer Society and helped connect her mother with a member of her local wellness community. Ultimately, her mother lived more than 5 years after diagnosis.

Today, Tapay staffs the ACCC Government Affairs committee, which is tackling issues such as implementing the new navigation billing codes, drug shortages, and financial toxicity. For a long time, she said, she separated her personal story from her professional life. But now, “It’s a pretty big reason why I’m standing here today, in the role that I have,” she said. “That was my trigger to get into this area.”

Talking about sexual health. Jessie Dorne, MHS, PA-C, is willing to go where few will—she talks to patients with cancer about their sexual health.

The physician’s assistant in gastrointestinal oncology has developed expertise in a highly important and hugely underserved area—helping patients with cancer deal with symptoms and effects of cancer treatment on their sexual health and intimacy. She came to the session armed with data: 90% of patients report this is their top unmet need in cancer care. The more advanced treatments may be the top culprits, as 50% of patients say they stop all sexual activity after a stem cell transplant. Childhood cancer survivors report difficulty with sexual function later in life.

This really isn’t a surprise. “Let’s look at what we do to our patients, and imagine why and how this could affect their sexual health,” Dorne said. It’s not just the physical effects of treatment, although these are considerable. “Because sexual health is psychosocial as well as medical, a lot of my patients talk about their negative body image. They’ve had a mastectomy; they will have a large midline vertical incision, and an ostomy appliance. How do feel confident in your body with your partner?”

Relationship dynamics change, as a partner becomes a caretaker. “The 2 cancers that have the highest rates of divorce are cervical cancer and breast cancer, because they happen to women in their 30s,” she said. The loss of both intimacy and fertility devastates relationships.

Dorne said he hoped to inspire others to take the same journey she has and gain expertise in helping patients and their partners have these conversations. Most providers have no training in this area. “It’s this hot potato topic,” she said—the medical oncologist may say talk to the surgeon, and the surgeon may say “find a urologist.”

“No one wants to own this.”

Dorne said it’s important to get rid of assumptions that patients don’t want to be intimate, or that it’s not on their mind if they don’t raise the issue. Patients may be embarrassed, and religious or cultural biases create barriers. “This is very, very well studied," she said.

To start conversations, for example, Dorne may suggest that other women have had a certain issue and ask if a female patient is experiencing the same problem. The idea that the patient is not alone opens the floodgates, she said.

Often the National Comprehensive Cancer Network’s (NCCN) “Distress Thermometer” is the screening tool that starts the conversation. NCCN guidelines also call for asking patients about sexual health at intervals, as symptoms or problems may evolve as sex hormones deplete over time, Dorne said.

When Dorne decided to become trained to help patients with their sexual health, she became credentialed through the North American Menopause Society. Online training is available. Her prescriptions include lubricants or moisturizers, and many items are not expensive. For pharmacologic therapy, she refers patients to a consulting urologist. “This is a great role for an [advanced practice provider], the person can become the local referral.”

It helps for patients to hear that “you are not alone.”

Unique needs of LGBTQ+ community. Mandi Pratt-Chapman, PhD, associate professor of medicine at George Washington University and associate center director, Patient-Centered Initiatives and Health Equity for the GW Cancer Center, addressed where the health system falls short in meeting the needs of patients with cancer who identify as part of the LGBTQ+ community. There are multiple challenges here:

• Typically, we don’t ask patients about sexual orientation or gender identity
• Even when we are willing to ask, we don’t know how to ask about gender identity—and the data are not standardized.
• We aren’t collecting data, so we are making assumptions—which is not good science.
• We aren’t documenting data in fields that are interoperable.
• We aren’t not trained to meet the needs of LGBTQ+ people with cancer.

“What do we need in terms of good care for queer people?" Pratt-Chapman asked. To collect good data, we must be willing to ask—just as we must be willing to ask about sexual health. The health system, Pratt-Chapman said, must be willing to grasp the importance of why these data are needed and how to use it.

Training and research cannot improve without better data collection—and no one should make assumptions about how data is being collected, she said. All training must address the current cultural and political context; for example, it’s completely reasonable that a transgender person might not want to identify themselves, given the action taken to force Vanderbilt University to turn over these patients’ records.

And sometimes researchers just get it wrong. “We have a forthcoming paper coming in JCO Oncology Practice providing some recommendations on how to ask these questions,” Pratt-Chapman said. When the National Academies issued a report charged with synthesizing existing data, “some of the measures that were out there don’t really work. So, when you have a question about gender identity that asks you to select one—male, female, or transgender—it doesn’t really work for lots of reasons, because male and female are sex constructs; they are not gender constructs. You can be male and transgender or cisgender.”

“It’s very difficult when you provide questions like that and ask someone to select one,” Pratt-Chapman said.

Research and training issues. When Pratt-Chapman started a research project on sexual health for patients treated in radiology and radiation oncology, “there were no articles on post-surgical affirming care.” So, she set to work doing interviews in 3 English-speaking countries, and she learned that all 3 health systems require selection of “male,” “female,” or “non-binary” before the electronic health record will advance to the next field. “So, we’re not there yet.”

There are billing and insurance gaps. There are no budgets for oncologist to counsel patients on the unique challenges of the LGBTQ+ population. An out gay physician reported that he is assumed to be culturally competent to treat a transgender patient, but he has no more training than anyone else.

An audience member asked what health systems could do to make physicians more comfortable.

“Why are we so worried about the provider being comfortable?” Pratt-Chapman asked. The provider’s job is to treat the patient; it’s their job to have humility and try.

“You’re going to make mistakes. Keep learning.”

Moving and mental health. Jay Harness, MD, chief medical officer, Maple Tree Cancer Alliance, presented evidence on “exercise oncology,” which involves getting cancer patients to move to reduce fatigue, anxiety, depression and improve bone health. This is still a young discipline, but the results are promising—studies have collected data on 2600 patients through last year and data show increases in muscular endurance, and 75.9% reported feeling more positive, along with 59% complying with therapy.

Of interest to payers, patients taking part had fewer hospital stays and shorter stays when they were admitted. There was an overall 47% decrease in readmissions. Studies also report improvements in all-cause mortality with specific improvements in breast, prostate, and colorectal cancer.

Harness was clear that patients are not completing intense training or running long distances. These are brisk walks, light resistance training, and stretching. The key is to get the patients started and to keep them showing up. “You know what doesn’t work? Brochure therapy.”

Lisa Marquette Porat, MSW, LCSW, FAOSW, US lead, Patient Advocacy, BeiGene USA, concluded the session with a call for advocacy for patient mental health. Lack of adequate staffing generally, including those trained to work with cancer patients, is a significant problem. So is the lack of mental health workers who can work with oncology staff.

Porat called for more attention to a “culture of care,” through a collaborative care model.

“This is not just burnout,” she said. How caregivers take care of themselves is a key factor in how well they can care for patients.

Several audience members said this has been on the ACCC agenda for years, but it’s hard to move the needle. The expectation of many workplaces is that health care workers just have to put up with long hours and challenging working conditions.

Said Nelson, “Can you imagine if the Commission on Cancer had standards to support the staff?”

It’s not easy, Porat said. “We have to work together both in our institutions and between our institutions,” she said. “We have to work together, or the people who suffer are our patients.”