In Part I, you learned about the incidence of cancer, its financial impact on employers, and that this impact will continue to grow in the coming decade(s). In Part II, you will get insights into what we have learned at Johns Hopkins, as well as in other workplace environments that is important for navigators to understand.
The following are some lessons learned from Johns Hopkins Medicine leadership who have looked closely at cancer incidence and the impact it has on employees and managers in workplaces across the country.
In February 2012, Johns Hopkins leadership (the chief administrative officer of the cancer center and the director of survivorship programs) launched into an initiative to more specifically and comprehensively support their own employees diagnosed with cancer or serving as a caregiver for a loved one with cancer. As part of this work, they included addressing the needs of supervisors and managers whose departments are directly impacted by an employee dealing with cancer at some level. The following is what was learned.
Wrong diagnosis, wrong treatment – If the pathologist was wrong in recording the cell type they thought they saw under the microscope, then the treatment plan will also be wrong. This results in overtreatment, undertreatment, and worst-case scenario, a further delay in getting the correct diagnosis, thus allowing the undiagnosed cancer to continue to grow and spread. There are some types of cancers that are rare and complex that should only be managed in a comprehensive National Cancer Institute–designated cancer center. There are other cancers that are more straightforward and easier to address that can be appropriately managed in a community setting. If the pathology results are incorrect on the biopsy, then everything that follows may also be clinically managed wrong.
Use of sick time, vacation time, and short-/long-term disability – When someone learns they have cancer, they might reflect back on their grandparents who were diagnosed with some form of cancer 40 or more years ago. Their recall is how sick they were from the treatments. This results in the employee assuming they will need to take off months at a time to endure their cancer treatments. Few people store up paid time off in anticipation of needing it for such a medical reason. Eventually, if they take off time from point of diagnosis to completion of treatment, they may be bankrupt in the process.
Failure to provide adequate support to employees – Supervisors can be at a loss for words, or worse, say the entirely wrong thing. Cancer stereotypes have changed dramatically, yet patients as well as employers may still have assumptions about how a diagnosis will affect work. Experts recommend having a specific plan before discussing a cancer diagnosis at work. The patient (employee) needs to have as much knowledge as possible and not be frightened to speak up regarding what may work best for him or her during cancer treatment. Supervisors and co-workers actually need a communication strategy that includes goals, a treatment schedule, possible side effects, delegation of work assignments, whether to tell anyone about the diagnosis, and whom to tell and why. Be fully aware of the company’s policy on sick leave, telecommuting, and flex time schedules. Be comfortable and assertive in discussing with the treatment team how measures can be taken proactively to reduce or prevent treatment side effects. Make the supervisor aware that treatment changes happen because of new information becoming known while treatment is being planned or even being given. As new test results provide new information, cancer treatment needs to be seen as a fluid process (At diagnosis: balancing cancer & work. CURE magazine. Ninth Annual Cancer Guide. 2015). Talk with the treatment team about the type of work they do, the importance of giving cancer only the time it needs to get rid of it, and the ability to hopefully dovetail a flexible work schedule with an National Comprehensive Cancer Network–approved treatment plan so that continuing to work, when feasible, remains an option. Most cancer patients today are actually able to work throughout most of their treatments because of improvements in treatments that have less of an impact on quality of life and fewer side effects. If the employee is directed to Human Resources department to complete paperwork for a long-term absence, then the employee will be removed from the work environment where their co-workers are part of their support system. Their paychecks will be fewer, and maintaining their health insurance may be jeopardized as well. Employees who are provided reasonable accommodations are commonly able to work during their treatments. This includes the employee needing to learn how to communicate with their oncology providers so that a work schedule and treatment plan can be dovetailed together. An employee, for example, who needs breast radiation daily for 6 weeks can request the 7 am appointment before work or the 5:30 pm appointment after work rather than accepting the 2 pm daily appointment time slot assigned, which would cause her to lose half a day of work for 30+ work days. That’s equivalent to 3 weeks of time away, which may not be covered by paid time off.
There are also employees with metastatic cancer, such as stage IV breast cancer that has spread elsewhere in their body, who may survive a decade or more with their body living in harmony with the disease. They can actually look quite healthy, resulting in a supervisor questioning if their employee really has cancer. Co-workers, too, may wonder how it is possible to be working full time if someone is “dying of cancer.” Each clinical situation is unique, however, and based on where the disease has spread and the prognostic factors of the cancer itself, it is common for women whose breast cancer is fueled by female hormones to be placed oral medication that can control her cancer for quite a number of years. On the flip side, however, are women with unfavorable prognostic factors who may succumb to the disease in a matter of months.
Failure to accommodate workers with cancer, protected under the Americans with Disabilities Act (ADA), due to a deficit in supervisor training and information – There have been situations across the country resulting in high-dollar lawsuits being won by the employee when a supervisor eliminated the employee’s job or even fired the employee for not performing up to par while undergoing cancer treatment. Lack of managerial training can be an expensive incident for the company to have to bear, not to mention the company’s reputation.
The rate of job discrimination against cancer patients and survivors has decreased, in part due to the ADA law of 1990 and other antidiscrimination laws that keep survivors from being treated unfairly within their workplace. Commonly, such discrimination occurs due to misconceptions regarding cancer and the patient’s ability to work. And although patients have the right to keep their diagnosis confidential, it is recommended they disclose their cancer history to their employer in case it affects their job performance and they need accommodations under the ADA (At diagnosis: balancing cancer & work. CURE magazine. Ninth Annual Cancer Guide. 2015).
Lack of education for caregivers impacting productive time – US businesses are highly impacted by caregiving. A 2004 National Alliance of Caregiving/AARP study funded by MetLife estimated that each year, businesses suffer a $29 billion loss in productivity due to caregiving. That equals approximately $1,1242.50 [BM1] per employee. These numbers have likely grown since this study was published. Employees who are also caregivers account for nearly 75% of early departures and late arrivals at the workplace. Caregivers often make long telephone calls at work to handle caregiving issues. Working caregivers have more stress-related illnesses. Employees who are unable to manage the demands of work and caregiving may leave their jobs. They deal with a serious financial loss and emotional stress. MetLife/AARP estimated a decade ago that the overall lifetime average wage loss is $700,000, which includes lost wages, lost Social Security income, and lost pension benefits (Gillen M, Wilken CS. Balancing work and caregiving: a guide for employers. www.edisifas.ufl.edu/fy873).
Caregivers are commonly drafted suddenly to become a caregiver too, without time to plan. These employees are the spouse, adult child, sibling, or parent of someone now diagnosed with cancer. The time they need off from work for appointments and caregiving can be unpredictable, and is based on the clinical condition of the individual diagnosed with the cancer. Some caregivers assume they must go to every doctor’s visit and treatment session. They need an oncology nurse navigator to help them determine which visits are pivotal, which result in decision-making or require acute posttreatment care at home. Sometimes it is more difficult to determine the best way to support a caregiver in the workplace because the employee is trying to work, take care of her loved ones, take care of the patient who is a family member, and maintain her own health and well-being. The caregiver may not be able to step back and see the impact leading to the reduced productivity within her workplace due to her unpredictable work schedule. This can become even more complicated if the employee is caring for someone who has advanced cancer and will die of their disease. Decisions need to be made when to be home versus at work, how to prepare for end of life, getting their loved one’s affairs in order, etc. Too often, due to failure on the part of the oncologist, a patient may be receiving treatment up to the last week of life and have no plan in place.
Lack of preparation of the management team to optimally manage – When someone is out on leave, a few days at a time or for a longer period, management needs to know how to maintain productivity while supporting the employee who is ill or caregiving. The manager also needs to know how to support the co-workers who are pitching in to support the employee as well as get the work done. Expectations need to be constantly reassessed. Someone dealing with chemotherapy fatigue may be able to work well for the morning hours but needs to rest in the afternoon. The manager needs to see the feasibility of creating a work schedule that enables the employee to work, perhaps even from home telecommuting during the morning hours, then taking the afternoon off as sick time. This all requires planning and effective organizational skills. It is like making a strategic war plan, otherwise there is a risk that the outcome will merely be a game of musical chairs.
Promoting health and well-being is recognized as an essential element of management and organizational competence (Workplace culture that promotes health and wellbeing for all: an imperative for health care managers and others. Perspectives in Public Health. 2015;135:220-221).
Cancer treatment needs to be seen as a fluid process that can change overnight. An employee diagnosed with colorectal cancer may have initially been told by his oncology provider that surgery will cure him, only to learn after additional tests that he now will also need chemotherapy and radiation.
No one likes to think about cancer, and usually only begins to explore it once they or someone they love is diagnosed. Presenteeism is a cause of lost productivity in the workplace, and happens frequently when a threat of a cancer diagnosis is occurring. An employee will likely not know what websites provide credible information, making the search for valid information harder and wasteful.
Employees have rights as employees, and their managers need to be well-versed on those rights. Educating managers about this information when newly hired is rarely retained. They need access to this information at the moment they learn about an employee dealing with cancer. The information provided must be continuously updated as internal policies change and as state and federal laws also are revised.
Loss of occupational identity can be a source of significant anxiety and depression, continuing or returning to work allows many patients to maintain a sense of normalcy and control. Even social psychologists have documented the importance of work to self-concept, self-esteem, and life roles and satisfaction (Peteet JR. Cancer and the meaning of work. General Hospital Psychiatry. 2000;22:200-205). Freud defined health as the ability to love and to work. Cancer patients often find that disability not only undermines unique aspects of their identity but also represents a distressing loss of normalcy and control (Muzzin LJ, et al. The experience of cancer. Social Sciences Medicine. 1994;38:1201-1208).
Work allows individuals to express and to realize core values, such as creating new knowledge, contributing to society, or providing for one’s own personal needs. It provides financial control and peace of mind. Some patients become depressed when they are no longer able to work because their self-esteem depended heavily on career accomplishments. Work has truly defined this patient’s life.
Even after treatment, despite higher survival rates, cancer remains a life-threatening illness that commonly prompts a patient to reassess their lives and reprioritize what is important to them. A diagnosis of cancer is a life-altering experience. When someone is dealing with such a major crisis, whatever can be done to keep the rest of their life as normal as possible will benefit the patient enormously. Keeping a routine work schedule and family/social schedule reduces anxiety, maintains communication with others, helps ensure their support team remains in place, and provides opportunities for dialogue and candor.
Connecting cancer resources and support for employees via their health insurance or their Human Resources department is commonly not utilized because it is not trusted by employees as they consider it a conflict of interest. Providing an employee benefit that is offered from an external and trusted source that is part of a credible organization has proven to work well for employees and managers.
Compliance rates with cancer screening guidelines are highest when there is access through insurance plan coverage (Musich S, et al. Overview of disease management approaches: implications for corporate sponsored programs. Disease Management & Health Outcomes. 2004;12:299-326).
Workplace educational programs have been shown to raise awareness of and screening for colorectal cancer (Bagai A, et al. Workplace colorectal cancer-screening awareness programs: an adjunct to primary care practice? Journal of Community Health. 2007;32:157-167).
Workplace screening for breast cancer reduces lost productivity compared with off-site screening. In addition, an employee whose breast cancer was diagnosed on a screening mammogram has half as many lost workdays for treatment as an employee whose cancer was detected later.
Providing job accommodations or other workplace stay-at-work or return-to-work opportunities has been shown to help employees with cancer remain on the job (Moskowitz MC, et al. Function and friction at work: a multidimensional analysis of work outcomes in cancer survivors. Journal of Cancer Survivorship. December 2013. doi:10.1007/s11764-013-0340-4).
To read the first part in this series, go here.