It was September 2008 when Eileen Z. Fuentes, then 34 and a mother of three young girls, received stunning news: She had stage 2 triple-negative breast cancer, a particularly aggressive form of the disease.
At the time, she was a human resources manager at a New York hospital. Though she received good medical care and support from her supervisor, she says she witnessed some unfortunate mistakes by her colleagues.
For example, a clerical employee violated her health information privacy by commenting on a test that showed a blood clot in Fuentes’ heart, a side effect of her treatment. And delays by co-workers in processing her long-term-disability forms forced her to have to return more than $1,000 in pay, she says.
In both situations, “I know it wasn’t done maliciously,” says Fuentes, who lives in Hasbrouck Heights, N.J. “But I took it personally.”
When people learn they have cancer, many thoughts go through their minds: What treatment will I need? Will my insurance cover it? What about my family? Fuentes experienced all of this and more. But she says her colleagues’ missteps threw her for a loop. When you are fighting cancer, “The last thing you want to worry about is [other] people doing their job,” she says.
An estimated 1.7 million new cancer cases are expected to be diagnosed in 2016.
In addition, she would have liked more than a bureaucratic response to her disease from her employer. “I wanted them to let me know that someone’s paying attention,” she says. “I wanted them to be human beings.”
Privacy or Protection?
An estimated 1.7 million new cancer cases will be diagnosed this year. About 1,630 people a day are expected to die of the disease in 2016. It’s the second most common cause of death in the U.S., following only heart disease.
Even though it touches so many people, cancer presents a quandary for HR professionals about how much they can—and should—reach out to those affected. Employers must provide certain benefits and protections, such as those guaranteed by the federal Americans with Disabilities Act and the Family and Medical Leave Act, but at the same time they are obliged to protect medical privacy under other laws, including the Health Insurance Portability and Accountability Act. Also, workers don’t even have to tell their employers if they are diagnosed with a life-threatening disease; they can simply report being ill and request time off to deal with it.
Sometimes an employee will inform his or her supervisor about a cancer diagnosis but the manager doesn’t tell HR. In other instances, HR professionals are told a person has cancer but feel it is not their place to get involved. Occasionally, the diagnosis becomes known to the employer only after medical claims reach the health insurer.
Regardless of how the news comes out, the result of not getting timely and relevant information to employees with cancer is often substandard care, increased costs, a loss of productivity and angst all around.
Offering a patient-navigation benefit can help connect people to the resources they need without violating their privacy. This service allows them to get information and advice from a “navigator”—in some cases a trained health care professional—who is not an employee of the company.
“Navigation services are a big help,” says Karen van Caulil, chair of the National Business Coalition on Health and CEO of the Florida Health Care Coalition, an employer group based in Winter Springs, Fla.
Still, says Rebecca V. Nellis, chief mission officer of Cancer and Careers, an educational organization based in New York City, in the effort to manage cancer in the workplace, “We’re pushing a big rock up a mountain slowly.”
One reason the journey is so challenging to navigate is that it is unique for each person. The catchall term “cancer” actually refers to more than 100 distinct diseases, each of which has varying symptoms, treatments and prospects for recovery. No two patients face the same experience—and organizations differ widely in their responses to the condition.
“It varies dramatically from workplace to workplace. There’s not a one-size-fits-all response,” says Barbara Hoffman, founding chair of the National Coalition for Cancer Survivorship and a faculty member at Rutgers School of Law-Newark in New Jersey.
That said, there are three crucial areas of support that employers should strive to offer to workers who have cancer:
Determining which treatment is most appropriate and how it can be provided.
Understanding health care, disability and other employer-provided benefits.
Dealing with the emotional impact of the disease.
“It’s important for benefits professionals to understand that gaps exist in all these three areas,” says Jeremy Nobel, medical director of the New York City-based Northeast Business Group on Health. Cancer-related benefits and some insurance payment systems “are totally opaque to most employees and, arguably, to many benefits professionals,” he says.
Often, employees who have just been given a devastating diagnosis have trouble absorbing even clearly explained information.
“When you get cancer, there’s not a whole lot of time for education,” says Martin J. Murphy, CEO of the CEO Roundtable on Cancer and AlphaMed Consulting in Durham, N.C. Despite being a veteran health care provider, Murphy remembers the shock he felt when he received his own cancer news. “I had to ask, ‘What did you say about a tumor?’ ” he recalls. “It took a couple of times” for the doctor’s statements to sink in.
The challenge for employers is significant. “You have all these benefits and programs and services, and you communicate and communicate and communicate. But in a crisis, the person doesn’t remember,” says van Caulil.
According to the National Business Group on Health and the National Comprehensive Care Network, employer-provided cancer benefits should include:
A medical benefit.
A pharmacy plan.
Clinical support and condition management.
Family medical leave.
An employee assistance program.
Health improvement programs.
Medical experts and cancer survivors recommend that employers formalize the steps that any supervisor or HR professional should take when an employee reports that he or she has cancer or another serious disease.
A team approach with a quick, coordinated response is advocated by Brenna Shebel, director of the Institute on Health Care Costs and Delivery at the National Business Group on Health in Washington, D.C. The physician or a health plan representative can initiate a meeting that includes the employee, HR, the employee’s supervisor and a representative from the employee assistance program.
The person running the meeting should demonstrate compassion but avoid speculative statements such as “You’ll be all right,” experts say. The leader should explain the worker’s legal rights and protections, including company benefits and policies, and guide a discussion about workplace modifications and accommodations—such as paid time off, leave-sharing, flexible or part-time hours, telecommuting, job restructuring, and leaves of absence.The meeting host should also ask questions about the worker’s preferences, including whether he or she plans to inform colleagues about the diagnosis. It’s also a good idea to identify an office point person who will serve as the worker’s contact when he or she is absent and craft a plan for how work will be handled. The meeting leader may also want to encourage the worker to contact one of the 64 comprehensive cancer centers in the U.S. for more information.
Federal law prevents an employer from discriminating against an employee with cancer. However, if a worker exhausts legally protected leave periods and doesn’t indicate that he or she plans to return to work, it may be possible to terminate that individual. Even so, that drastic action might be difficult to defend in court—and would almost certainly damage the organization’s reputation and employee morale.
Teaching managers and HR professionals how to respond when an employee receives a cancer diagnosis can make a huge difference. Checklists and documents outlining appropriate steps include those offered by Workplace Transitions and the Job Accommodation Network.
However, Nobel notes, “There’s not a lot of systematic guidance that’s easily digestible and easy to deploy.”
‘An accommodation can be something like having a printer at the employee’s desk so they don’t have to run up the stairs all the time.’
- Rebecca V. Nellis, Cancer and Careers
Employers may proactively decide to customize existing materials for their workplaces. Often, however, it is only after going through the experience of supporting an employee with cancer that organizations come to realize the optimal process. “Companies have a lightbulb moment,” Nellis says. “Then things get implemented.”z
Typically, accommodations for cancer patients are comparable to those for other individuals with disabilities.
“An accommodation can be something like having a printer at the employee’s desk so they don’t have to run up the stairs all the time,” Nellis says. The worker’s point person can keep the patient up-to-date about activities he or she has missed and manage the flow of information, preventing overload. “We see this happen all the time when someone goes on maternity leave.”
Managers must be coached to make carefully thought-out statements to the employee’s team members to let them know that no one is receiving special treatment—especially if the employee’s diagnosis is not widely known. For example, Nellis suggests saying, “Jane is availing herself of some benefits that the company provides. If you were in that position, here’s what you would be getting.”
Even in offices where employees have told their colleagues they have cancer, ill workers typically want to be treated like everyone else. “Maintaining a sense of normalcy is very important for a person diagnosed with cancer,” Shebel says.
When the employee returns to work, recognize that he or she likely will need continuing intermittent time off. “Re-onboard them without overwhelming them,” Nellis advises.
Companies that demonstrate success in managing workers with cancer can earn the CEO Cancer Gold Standard award from the CEO Roundtable on Cancer. The Buffalo Niagara Human Resource Association partnered with the American Cancer Society starting in 2012 to encourage employers to seek that designation. Nationally, award winners include Avis Budget Group, State Farm, Dell, Johnson & Johnson and Novartis.
For employers to respond effectively to cancer, “HR folks need to be empowered,” Murphy says. “Health and wellness has to be a core value of the CEO.”
Suzanne Garber was diagnosed with ovarian cancer in 2002 while working as a manager at a large logistics company. She says it bothered her that “HR was completely absent from my event. I think there is an unstated expectation by ill employees that their organization will care about them, whether that means a phone call, a card or a personal message.” Such contact “can mean the difference between feelings of alienation and indifference and the motivation to live,” she adds.
When Garber learned that an employee in a different department was ill and on leave, she sent a handwritten card to his family. Although she did not know what the worker’s illness was, she included her private phone number in case any family members wanted to contact her. As it turns out, they did: The family invited Garber to visit the employee in the hospital, where he expressed his gratitude that someone had reached out.
Garber has been cancer-free for more than a decade and is now CEO of Philadelphia-based Gauze, which manages a global hospital database. When an HR professional first learns of an employee’s serious disease, “the legal and regulatory framework just takes over,” she says. “What’s lacking in so many companies is the human touch.”
Garth Callaghan has had a much different experience with his employer. He often works from home, with flexible hours, as an IT recruiter for Experis, a division of ManpowerGroup. In fact, when he interviewed with Experis in 2013, he informed the company that he was recovering from cancer surgery. And a few months after he started his new job, he had to sit down with company officials and explain that his cancer had returned. This time, he was told, there is no cure.
‘Don’t forget that this person is scared for their life. Be empathetic.'
- Garth Callaghan, Experis
When he is having a bad day, he shoots an e-mail to his manager. He might take a nap. He gets no pushback. “I’m very thrilled with how I’m being treated in my situation,” says Callaghan, who lives in Glen Allen, Va., and is also an author and inspirational speaker. “I realize that it might not be the norm.”
His advice for HR professionals when people share that they have cancer: “Don’t forget that this person is scared for their life. Be empathetic. Use words that show that you’re on the same side as the employee.”
The Long-Lasting Impact
As a veteran recruiter who owned her own company when she was diagnosed with cancer in 2013, Gail Tolstoi-Miller had a lot to navigate, both personally and professionally. She notes that people who get cancer wonder, “Am I going to have a job when I go back to work? Are they going to see me as weak?”
‘Employers need to realize that cancer is not done when you have the last treatment.’
- Gail Tolstoi-Miller, Consultnetworx
Over the years, “I’ve heard stories where companies are amazing. I’ve heard stories where companies are not supportive,” says Tolstoi-Miller, CEO of Consultnetworx, a consultancy, and Speednetworx, a networking event company, based in Livingston, N.J. “Employers need to realize that cancer is not done when you have the last treatment,” she says. “It’s like a post-traumatic thing” that impacts the psyche of the employee indefinitely.
“We need to bring some compassion back to the workplace,” says Tolstoi-Miller, who is now in remission. “Employees give their all. We owe them.”
Fuentes says she is now free of cancer. But the disease tested her, and her struggle was intensified by the recent deaths of her father and her brother. “I was determined to take all the pain, hardships and struggles and turn them into a positive,” she says.
She used her experience to transform her career. Since September 2015, Fuentes has worked as a navigator for breast and gynecological cancer patients.
“I’m sort of a benefits case manager. I help people fill out forms and tell them what they need to know. I’m their advocate,” she explains.
“It is not completely a career change,” she says. She feels she is offering others a more personal form of human resources—the kind she never got from her own former employer.
Steve Bates is a freelance journalist in the Washington, D.C., area and a former writer and editor for SHRM.
Opening photo: Eilleen Z. Fuentes. Photo by Susan Farley.