Employers concerned about employee health should turn to patients for advice
Anne Marie Cerato both belies and represents the image of the modern cancer patient. The vibrant thirtysomething with the energetic voice is not the first person you would identify as being in a clinical trial for Stage 3 lung cancer. But her presence as a speaker at Benefits Canada’s Cancer Care Summit in March is a potent reminder that chronic disease has mostly outgrown the tired old image of previous years. “We’re moving past our parents’ and grandparents’ generation where cancer was a death sentence into an era where cancer is becoming more like a chronic disease, like diabetes or heart disease,” said Dr. Helen Mackay, an oncologist at Princess Margaret Hospital in Toronto and a fellow speaker at the summit.
In other words, patients are surviving their diagnoses and increasingly returning to their old identities as reliable long-term employees. As their managers and co-workers, this change calls us to action, to provide these admirable survivors the space and support they need in dealing with their illnesses, and to make it as easy as possible to make their transition back to work.
Can-do Attitude
So what can employers do? Cheryl-Anne Simoneau, a patient advocate who lives with chronic myelogenous leukemia (CML) and is president of The CML Society of Canada, captured what was perhaps the summit’s most fundamental lesson: encourage cancer patient engagement through all levels of decision-making processes about patients’ work and treatment. “Time and again a decision is made without consulting patients, but patients often have solutions for you that are not going to drive up costs and will help you use resources better,” said Simoneau. “You need to develop an atmosphere of trust with employees.”
In terms of practical solutions, Simoneau advised employers to look at their benefits program. Can you have a cancer coach? Try pairing employees with a trusted buddy at work. Pay attention to employees who complain about picking up the slack: is there room for improvement there? Allow employees to use vacation and personal days to extend recovery time, create flex time or add to a leave. She also urged preventative and stress reduction initiatives, including developing good nutrition and exercise programs, and encouraging work/life balance.
Simoneau also suggested that insurance companies link patients with support groups that can teach them about their disease, offer programs about nutrition and consider extending access to spouses and employees’ children.
Cerato, an elementary school teacher with the Toronto District School Board, echoed Simoneau’s appeal to involve the patients. She’s particularly adamant in her recommendation that employers should have one person to handle leaves, whether for maternity or illness. “When I went off work, it was a jumble because I had to co-ordinate everything myself—benefits, employee services, payroll,” said Cerato, who is insured through the Ontario Teachers Insurance Plan. Although her insurer was helpful, the system was a bit overwhelming for someone with a diagnosis on her mind. “It took forever to get answers from some people, and I had 30 days to make sure my benefits were in order and in good standing.”
With only 14 days left at work, Cerato said her life was “a tornado of activity” and admitted that sometimes she didn’t know whom to call. “You have a lot on your plate when you’re leaving for illness,” said Cerato. And, as a cancer patient, she realized she had more notice than some employees with other diagnoses. “What if you have a heart attack or stroke?” asked Cerato. “Your family members would have no idea whom to call. Being able to streamline that process would be great.”
Besides a single point of contact for leaves and publishing those contact details where employees can easily find them, Cerato also recommended mandating those contacts to respond in a timely manner and allowing patients extended hours for contacting HR.
Beyond her identity as an employee, Cerato said she has also felt her age in the cancer journey. Or rather, her youth. Sitting in waiting rooms, she often looks around and realizes she is the only one without grey hair. “Often the residents would talk to my mother first and I would have to point out I was the one with cancer,” recalled Cerato. As a young adult with cancer, Cerato urged employers to become more aware of the specific needs of the thirtysomething group: a loss of independence, fertility, career changes and other psychosocial and financial needs.
Employees Can Help
Besides offering the young adult perspective, Cerato also modelled what it means to be an organized patient. Joking that it’s an extension of her Type A personality, Cerato has managed her own treatment path as efficiently as any work project, requesting copies of all her scans and reading through test results to flag questions. She organizes and consolidates all her paperwork, including doctors’ notes, insurance information and test results, and uses a spreadsheet to track her medical appointments.
Beyond being orderly about her files, Cerato is proactive about her treatment to the point that she has become her own best advocate. Initially diagnosed at age 30 in 2009, her preliminary treatment of radiation and chemotherapy stalled the cancer, but it returned in May 2011. She’s spent significant time searching the Internet to educate herself about her condition, and on sites such as CanadianCancerTrials.ca and ClinicalTrials.gov to stay on top of the latest research and clinical trials. A blog on Facebook led her to information about a promising new drug before her doctor even knew about it. Her biggest frustration? That Sunnybrook Health Sciences Centre did not know about the clinical trial happening at Lakeridge Health Oshawa. Today, she’s on long-term leave and involved in a clinical trial that requires her to report to a hospital every three weeks, in addition to taking an expensive medication.
Cerato also took control over her time: she started a blog, TheseAreMyScars.org, as a way to update friends and family. She suggests that if there’s any time for patients to be a bit selfish about their time and treatment, it’s now. “Be direct with friends and family about how you want to communicate,” she said. “If you don’t want visitors, say so—it’s about you.” As it turns out, her website and blog have also become a destination for other young people with cancer to share their own stories and scars.
Returning to Work
Although cancer may rack the body, it can also wreak havoc on the mind. For Cerato, it was not until she prepared to return to work that the emotional fallout of having such a serious disease at such a young age really hit her. While the nature of Cerato’s teaching work meant that her only options in terms of returning to the classroom were part-time and full-time, she encourages workplaces with easier schedules to be even more flexible since the return can be stressful. “There will be fatigue—not the kind where you just need a coffee, it’s like a whole body shutdown,” said Cerato. “Being able to accommodate employees by letting them do a partial load, or reducing the hours in their schedule, can help alleviate that fatigue.”
Although Cerato found her own return to work in January 2011 at half days to be overwhelming, she was pleased that she was assigned a co-ordinator to act as her advocate in the process. “Having a return-to-work plan that involves all the stakeholders and hammers out the needs for all parties involved is really beneficial because that way, everyone knows what people are thinking,” she said.
Following her second diagnosis in May 2011, Cerato is now on long-term leave while she participates in a clinical trial and said she struggles with both chronic insomnia and chronic fatigue. She uses and recommends mindfulness-based stress reduction to deal with the ups and downs of her illness, and is also grateful that the year that she signed on as a teacher it became mandatory to sign up for long-term insurance. Now she recommends that all employees take the option. “It really is a lifesaver,” she said.
While hearing from doctors who can educate us on the facts of cancer is important, turning to patients for advice and guidance on everything from benefits to return-to-work planning is equally valuable. After all, these patients are also friends we’re more likely than ever to see smiling once again as they return to our boardrooms and cafeterias. “Increasingly, we have a large population living with cancer, and living is a very important thing to do,” said Mackay. “It’s no good if people stop doing the things they enjoy, and work’s part of that. We have to ensure that people have the support to keep living with this disease.”
Suzanne Bowness is a freelance writer based in Toronto. sue@codeword.ca