Treating the Whole Person: How Cancer Centers Are Addressing Social Needs
, by Nadia Jaber
The Feed1st food pantry in the oncology infusion clinic of the University of Chicago Medical Center is open to anyone who needs it, and they can take as much food as they want.
More than 2 million people in the United States are expected to be diagnosed with cancer this year. No two among them will experience cancer exactly the same way. Even so, certain groups of people will share similar cancer experiences—experiences marked by deep disadvantage.
American Indian and Alaska Native people, for instance, have the lowest survival rates for nearly all types of cancer. Black women with ovarian cancer don’t live as long as White women with the disease. People living in rural areas are less likely to get regular cancer screenings than those who live in cities. And people who live in areas where poverty has been the norm for decades are more likely to die of cancer than those living in more affluent areas.
These patterns of worse outcomes among specific groups of people are called cancer disparities. Although biological differences can contribute to some cancer disparities, more often, the root cause of cancer disparities is an interconnected set of nonbiological factors.
Factors such as income, level of education, experiences of discrimination, and availability of neighborhood resources directly affect whether people have enough healthy food to eat or have reliable transportation to get to doctor’s appointments.
Those needs, in turn, determine whether people get regularly screened for cancer, get diagnosed in a timely way when they have symptoms, get high-quality care, and finish their treatment. Ultimately, these factors play a major role in how someone navigates the health care system and whether someone survives cancer.
While treating people’s health-related social needs has always been a part of health care in one form or other, cancer centers and community cancer clinics are increasingly viewing the people they treat through a social lens—and changing how they approach their care accordingly.
“We look at our oncology patients as [the people they were] before they came to us,” said Jessica Kreitman, head of social work at the Dubin Breast Center of the Tisch Cancer Institute and the Tisch Cancer Center at Mount Sinai in New York. “They [had] their own concerns, their own issues, their own financial challenges. And then they received a cancer diagnosis, which doesn’t pause their other concerns and needs.”
Some cancer centers are ramping up existing programs or starting new programs that address patients’ social needs just as they would treat any other aspect of health and disease. These programs include food pantries, free rides to oncology appointments, and access to free legal aid.
“I’m not of the mind that the health care system can solve all social problems,” said Stacy Tessler Lindau, M.D., a gynecologist and researcher at the University of Chicago. “But I am of the mind that it is our job [as health care providers] to treat the social dimensions of people’s lives as essential to their health.”
Healthy eating—an essential part of cancer care
People facing a cancer diagnosis are bombarded with fears and worries about finding the right doctor, choosing the best treatment, what side effects they’ll have, and whether their cancer will come back. In addition to all of that, thousands of cancer patients also worry about having enough food to eat every day.
For many, the astronomical costs of cancer treatment and time lost at work force them to slash spending at the grocery store, especially if they were already living on a tight budget. Between a quarter and half of all people with cancer don’t have continuous access to healthy foods—a problem called food insecurity. That’s much higher than food insecurity across the United States, which is estimated to be around 10%.
Adequate nutrition—or the lack thereof—has a major hand in a person’s chances of surviving cancer. A 2018 study, for example, found that people facing food insecurity had a higher risk of death from cancer. In fact, food insecurity was found to be the strongest tie between poverty and higher cancer death rates.
People experiencing food insecurity may stop, delay, or make changes to their cancer treatment so that they can afford to feed themselves and their families. Food insecurity can also contribute to other diseases, like diabetes, that can complicate cancer treatment.
Experts say a paradigm shift is needed: Healthy eating should be seen as an essential part of cancer treatment and should be included in the scope of cancer care.
Dr. Lindau agreed, saying, “we have not done our job treating a person for cancer if they go home feeling uncertain about where they'll find their next meal.”
At the University of Chicago Comprehensive Cancer Center, healthy eating is made easier through its Feed1st food pantry. Launched by Dr. Lindau and her colleagues in 2010, the program stocks food at 11 sites dotted across the medical center, including a site at its cancer center.
Whereas most food pantries in medical centers require users to have a prescription or an eligibility card to track who’s using the pantry and to prevent stealing, Dr. Lindau explained, the Feed1st program is different. Its sites are in highly visible areas, are open to anyone in need, and have no limit on how much food people can take. That’s because, to her and her team, getting people the food they need is more important than the benefits of eligibility cards, she said.
“We started [Feed1st] as an experiment, an open question [of] whether we could sustain a fully self-serve pantry,” Dr. Lindau said. More than a decade later, she and her team are confident that the answer is a resounding yes. The program has sustainably served nearly 100,000 people.
In comment cards, pantry users write things like, “‘This is a godsend. I don’t have the time or money to grocery shop.’ Or ‘Thank you for caring about me as a whole person. It makes it easier to come back for this difficult treatment.’” And, Dr. Lindau said, some patrons even wind up volunteering to help with Feed1st food drives or serve on its advisory board.
“Creating an outlet for people to help alleviate others’ suffering, I think, is one small antidote to the cancer experience,” she said.
Free rides to oncology appointments
One of the first steps of getting cancer care is going to a doctor’s office or other medical facility. But for many people with cancer, that seemingly simple step is not so simple. They may not have a car or access to public transportation. Or they might not have anyone to rely on for rides when they’re too sick to drive or take public transportation. For others, the nearest medical facility is hours away, and they can’t take time off work or secure childcare to make that trip several times a week.
Numerous studies have found that transportation challenges force people with cancer to skip or delay their oncology appointments—or even stop going to them altogether. Lack of transportation can also cause people to delay or miss recommended cancer screenings.
Complicating matters further, cancer treatment often requires multiple doctors’ appointments a week. Radiation therapy, for instance, is typically given several days a week for multiple weeks. For someone lacking reliable transportation, radiation therapy can be a major challenge to get through. But missing just a few radiation appointments makes it more likely that the cancer will grow back and lowers chances of survival.
To help patients get to and from oncology appointments, some cancer centers provide free rideshare services for their patients. For example, a study found that a rideshare service at Seidman Cancer Center in Cleveland, Ohio, helped patients complete their radiation therapy.
Other cancer centers are piloting transportation services for cancer screening appointments. At Fred Hutchinson Cancer Center in Seattle, researchers found that offering a free rideshare service helped people get home after a colonoscopy, a procedure that requires sedation. People who used the rideshare service reported that they could not have completed their colonoscopy without the service.
Outside of cancer centers, some nonprofit organizations offer transportation services for people with cancer, including American Cancer Society’s Road to Recovery program, and Alex’s Lemonade Stand Travel for Care Program for children with cancer. Another American Cancer Society program, called Hope Lodge, offers cancer patients a free place to stay if they need to travel to another city for cancer care.
Lawyers join the medical team
Aside from needing a way to get home from doctors’ appointments, many cancer patients may not have a home to get back to. On top of being a basic human need, housing—like food and transportation—is linked with cancer outcomes.
People experiencing housing issues like a lack of affordable, stable, or safe housing, are less likely to get screened for cancer and more likely to have delays in treatment after being diagnosed. They are also more likely to die from cancer.
Some groups are more likely than others to experience housing challenges. For instance, past and ongoing discrimination in mortgage lending practices have prevented Black Americans and low-income families from obtaining stable housing in neighborhoods with ample resources.
The impact of decades of discrimination in housing practices has bled into cancer rates. A recent study found that Black women living in areas where residents were historically denied mortgages (a process called redlining) were more likely to be diagnosed with aggressive forms of breast cancer than Black women living in non-redlined areas. And White women living in historically redlined areas were more likely than White women living in non-redlined areas to be diagnosed with late-stage breast cancer.
Health centers have realized that “there's only so much the medical team can do” to help their patients with complicated social needs caused by housing insecurity, said Allison Charney, executive director of the Mount Sinai Medical Legal Partnership.
So, some health systems like Mount Sinai have added an unusual member to the medical team: a lawyer. Through medical–legal partnerships, these lawyers help patients facing challenges with housing, immigration, or family matters, free of charge.
In the year since Mount Sinai Medical Legal Partnership established the legal clinic within the Dubin Breast Center, they’ve helped close to 50 patients, many who have had a housing issue, Ms. Charney said.
Some patients, for example, need help when they fall behind on their rent. “All of a sudden, you're sick and you can't work. And then your rent just tumbles,” Ms. Charney explained.
She recalled a patient who couldn’t find stable employment due to the demands of her breast cancer treatment and owed more than $8,000 in past-due rent. The legal team was able to help her get an emergency grant for New York City residents that cleared her past-due rent. With that resolved, “the patient could remain in her house and continue her treatment,” Ms. Charney said.
Other patients need help dealing with unsafe or unsuitable housing conditions. “They live on the 13th floor, but may not have a working elevator,” Ms. Kreitman explained. “If you're getting treatment that may be debilitating you, that's a real barrier to your care.”
There’s “been an incredible response from patients—and from the providers—that they have this resource to provide to their patients,” Ms. Charney said.
Other medical centers across the country are also seeing the value in medical–legal partnerships. “I get calls all the time from places that are implementing new programs or expanding their programs and [are] getting our expertise,” Ms. Charney said.
The bigger picture
Programs that address specific needs like transportation, food, or housing can have a big impact on individual people, said Reginald Tucker-Seeley, Sc.D., principal/owner of Health Equity Strategies and Solutions.
But making a dent in cancer disparities on the national level requires thinking about the bigger picture, said Dr. Tucker-Seeley, whose company helps organizations, departments, and community committees/coalitions develop strategies to address health disparities.
One part of the bigger picture is that patients often experience multiple social needs at the same time. So, a program that only addresses one need is like fixing one pothole in a street chock full of them.
But health care systems and cancer centers often lack an overarching strategy to address multiple social needs simultaneously, Dr. Tucker-Seeley noted. A comprehensive strategy includes screening for social needs, connecting patients to resources to address those needs, evaluating whether those needs were met, and linking the resolution of needs to cancer outcomes, he explained.
However, there is a limit to what health care systems and cancer centers can do to address the social needs underlying many cancer disparities, Dr. Tucker-Seeley said.
Beyond programs at individual hospitals, state and federal efforts also have a key role, he continued. Things like family medical leave, Medicaid expansion, and cancer screening coverage components of the Affordable Care Act can make a big difference for social needs nationwide, he said.
Ultimately, Dr. Tucker-Seeley said, “we can’t expect the health care system to address all the social needs underlying many cancer disparities.”