“Road-Mapping” a Workable Schedule

For newly diagnosed patients, there are many factors to consider when deciding whether or not to work. The reality is that some of these factors are always going to be in natural conflict with one another. Therefore, one role you as the healthcare provider can play is to support your patient in accepting that a “perfect” solution is unlikely. Rather, the goal of this process is to ask the right questions and develop the most workable path forward for your patient.

Some questions he/she should consider are:

• How will treatment affect his/her work and schedule?
• What are his/her job demands, both physical and mental?
• What are the new barriers, if any, to getting to work? For instance, do treatment side effects make it uncomfortable to catch the bus or the subway?
• How many hours, realistically, can he/she put in now or upon return?
• What other areas of life — cooking dinner, helping children with homework, tending to aging parents — take up substantial hours and may need to be delegated at least temporarily?
• If your patient delays a return to work, what would the downsides be — financially, emotionally and in any other ways? What are the rewards, including financial and emotional? Do the rewards outweigh the downsides right now?
• How is personal identity connected to your patient’s work?
• What parts of the job might be more difficult during or after treatment? For instance, if a patient has to lift heavy boxes or equipment, can an accommodation be made?
• How flexible is the work environment?
• Can other accommodations be made? Throughout this section, we’ll explore these questions — and more.

Gathering Relevant Information

Collecting and thoughtfully reviewing key information can help patients make the best possible decision about whether to work through treatment or take time off. Relevant information falls into three main categories:

• Medical and treatment information
• Work information
• Legal information

Medical and Treatment Information

Communicating with the healthcare team. Remind your patients that good communication with their entire healthcare team is an important part of planning treatment. This dialogue should include conversations about available treatment options, the anticipated timeline, side effects, and ways to reduce and/or manage them. It is also useful for patients to share their personal work goals with their healthcare team; for example, wanting to work as much as possible or scaling back based on their treatment schedule. Doing so ensures the entire team — providers, patients and caregivers — are all on the same page.

Suggest that your patients:

• Discuss concerns related to returning to work openly and honestly.
• Report treatment side effects, especially those that will impact their work ability.
• Tell the healthcare team what their job actually entails. For example, is their job physically or mentally demanding? What is their commute like? What hours are normally required? What other details help paint a picture of their work life?
• Discuss with the team their priorities about returning to work, specifically their re-entry plan, and explain why it’s so important to them (if it is).
• Work out a treatment plan with the healthcare team taking all of these factors into account.

Talking about work-friendly treatment options. If your patient is hoping to return to work while still in active treatment, explore whether the treatment program might be tailored to his or her work schedule — without compromising its effectiveness. Consider the following:

• Treatment options have expanded greatly. By working with you and the oncologist, patients may be able to find a treatment regimen that works best while also allowing them to maintain their lifestyle — including a return to work.
• It may be possible for treatments to be scheduled around their work demands, at least somewhat. For instance, could chemo be done at the end of the week, giving them the weekend to rest? Your patients may feel that they can’t request a different schedule. It is important that you remind them that it can’t hurt to ask.
• New combination treatments and at-home treatments can save time and energy. For example, a potential option might be oral chemotherapy, which can be taken at home, so it requires fewer visits to the doctor.
• Not all treatment regimens can be adjusted; the goal is the most effective treatment, not the most convenient.

Work Information

For patients who are currently employed, knowing about and understanding their company’s policies is a key piece of the information-gathering process.

Company policies. A company handbook may be the best place to start, as it’s likely to contain a lot of helpful information — on health insurance and other benefits (including disability and life insurance), company policies (such as donated leave time and telecommuting), and how to go about requesting time off or “reasonable accommodations.”

Another way for patients to get questions answered is to consult their company’s human resources department — if there is one. In addition to what’s referenced above, HR can tell your patient how the company has handled similar situations in the past. Many employers have developed contingency plans for sick workers, including things like flextime and job sharing.

Some employers may also offer options to patients that would be considered “reasonable accommodations” under the Americans with Disabilities Act (ADA), such as temporarily shifting job duties or allowing patients to take short, scheduled breaks during business hours to boost productivity.

Patients should also ask specifically whether their company has an Employee Assistance Program as part of its benefits package. EAPs are designed to assist employees and their families with resolving a wide range of personal and work-related problems. Here are the things your patients will want to look into:

Employee benefits

• What does their health insurance policy cover?
• Do they have dental and/or vision insurance?
• Do they have short-term and/or long-term disability insurance?
• Do they have life and/or accidental death insurance?

Other benefits

• Does their company have a sick-time policy?
• How much vacation time or paid time off (PTO) are they entitled to?
• Does their company have a flextime or job-sharing policy?
• Do they offer any other flexible work options, such as telecommuting or accessing a leave bank?

Reasonable accommodation process

• Is there one in place?

Medical leave process

• Is there one in place?

Legal Information

Finally, as part of this initial round of data collection, it’s important for patients to understand what legal rights they may have in the workplace. Many working people with cancer don’t realize that they may be protected under federal and/or state laws. These laws can be critical tools in helping to balance work and cancer treatment, so it’s important that you and your patients know about the various protections that exist.

Americans with Disabilities Act. The ADA can be very helpful to job holders or candidates who are living with cancer. However, to access protections under the ADA they must be qualified for the job, and the job must be either with a private firm that has 15 or more employees or with a local or state government employer. Additionally, they must have “a disability,” which is defined under the ADA as “a physical or mental impairment that substantially limits a ‘major life activity.’” With cancer patients, often it is not the disease itself that creates the disability but, rather, the side effects of the treatment (e.g., nausea, cognitive difficulties, fatigue, neuropathy and/or depression).

A “major life activity” is anything that the average person in the general population can perform with little or no difficulty. Walking, talking, breathing, eating, sleeping, thinking, communicating and performing basic bodily functions are all examples of major life activities.

The ADA prohibits all types of discrimination based on:

• An actual disability
• A history of a disability
• A perceived disability (i.e., being regarded as having a disability)
• An association with a person with a disability (e.g., being a caregiver).

If an eligible person has or has had cancer, this law:

1. Protects him/her from discrimination in all phases of employment (hiring, firing, benefits, etc.) and
2. May entitle him/her to reasonable accommodations.

“Reasonable accommodations” is a legal term that refers to adjustments in the workplace that help employees work or continue to work. Examples of possible reasonable accommodations include a modified work schedule, reassignment of an employee to a less physically taxing position or supplying the employee with a more comfortable chair. Keep in mind that only individuals who currently have a disability or those who have history of a disability and are still experiencing some difficulties are entitled to reasonable accommodations.

Reasonable accommodations will depend on the nature of the disability and the job. If your patient is unsure which adjustments may work for his/her situation, contact the Job Accommodation Network, a program of the U.S. Department of Labor (www.askJAN.org). JAN offers a Searchable Online Accommodation Resource system that allows people to explore various accommodation options for different types of medical conditions in particular workplace settings.

An employer may not refuse reasonable accommodations for a person with a disability unless the modification would cause the employer undue hardship. To be considered an undue hardship, the accommodation must involve significant difficulty or expense for the employer.

Your patients can request reasonable accommodations during the hiring process or at any point during their employment. However, it may be in their best interest to ask for a reasonable accommodation as soon as a problem or an issue becomes known — and before their work performance suffers.

For an in-depth look at the ADA and reasonable accommodations, go to www.eeoc.gov/publications/ada-your-employment-rights-individual-disability.

State fair employment fair employment law. State fair employment laws are similar to the ADA. As the name suggests, these laws vary from state to state but may be more protective in that they:

• Have a broader definition of what disability is.
• Specifically list cancer as a potential disability.
• Cover employers with fewer than 15 employees.

Patients should visit their specific state fair employment agency’s website for information on individual state laws that prohibit disability-based employment discrimination.

For more information on state-specific resources, visit Triage Cancer’s Resources by Location page.

The Federal Rehabilitation Act. Like the ADA, the Rehabilitation Act prohibits employers from discriminating against employees because they have cancer. This act, however, applies only to employees of the federal government and to private and other public employers who receive federal funds.

For more information on the Rehabilitation Act, visit www.access-board.gov/law/ra.html.

Thinking Through Disclosure in the Online Space

The preceding section covers the importance of guiding patients through the information gathering process so that they’re able to make the best possible decision for themselves regarding whether to work during treatment. This section looks at ways to assist patients in thinking through the concept of sharing information about their diagnosis and treatment online.

It’s important for patients to keep in mind that any information they share on social media may have an impact on their work life. Cancer patients and survivors may feel inclined to turn to online communities for support; however, they should keep in mind that any aspects of their story they share on the Internet or via social media can become public — and may stay public for an indefinite period of time. They also need to know that human resources departments and recruiters routinely peruse LinkedIn, Facebook, Twitter and the blogosphere. That means it’s possible that a current or future employer might come across something that reveals a person’s health status or history. As such, it’s important for patients to take active steps to control their narrative by maintaining a personal online brand that is attractive, positive and conveys exactly how they would like to be represented.

Patients should Google themselves. Patients (and everyone, really) should Google themselves with the critical eye of a boss or potential boss. Remind them that once they put information “out there,’’ it stays out there. By Googling themselves, patients can at least be aware of what their current or future boss can find out — and prepare appropriate answers to potential questions they may have to field.

Patients should quiz themselves before posting. Encourage your patients to ask themselves the following simple questions before posting information, opinions or photos — especially to a social media site:

• Would I want a boss — current or future — or coworkers to see this?
• Would I want this on the front page of a newspaper or the homepage of my favorite news site?
• Would I want my family to see this?

Even patients who have already been very open about their diagnosis may want to ask themselves these questions when posting about other topics — particularly if they choose to make additional disclosures related to their treatment and wellbeing. And if they are hoping to keep a low profile about their cancer, they should think even more seriously about what to post.

Consider what their loved ones are saying. It’s also essential for patients to think about what people in their networks are saying about them. Often a patient’s friends and family members will show their support by tagging the patient in a post that mentions his/her cancer diagnosis. For patients who want to maintain their privacy, such a post, though well intended, may lead to accidental, undesired — and very public — disclosure. Patients need to communicate very clearly with their networks about their personal preferences regarding disclosure in the online space (or anywhere). Ensuring that everyone is on the same page — and acts accordingly — can help your patient stay in control of the message.

Considerations when blogging. Many patients and survivors blog about treatment, recovery and other cancer-related topics. If your patient wants to blog, he/she first needs to decide whether to do so using his/her actual name.

“Going public” might make it easier to build an audience; however, if your patient is uncomfortable identifying him/herself or isn’t planning to disclose within a work context, then using a pseudonym or remaining anonymous might be a better choice.

Another option is to use www.caringbridge.org, a social platform designed for anyone with a significant health challenge. It offers more-robust privacy settings than traditional blog sites (more on this in the next section) and can be used to update family and friends easily, saving patients and caregivers from having to send numerous emails or make multiple calls. Another site, www.mylifeline.org, provides a similar offering to cancer patients, survivors and caregivers.

Maintaining privacy online. Paying attention to privacy settings on social media sites such as Facebook allows patients to maintain control over who has access to different areas of their profile. Privacy policies on social media sites change frequently, and keeping up with those changes can be a challenge. The best course of action for patients is to test their privacy settings and make sure the information they post passes the “quiz questions” listed on page 11.

When talking to patients about privacy policies on sites such as www.caringbridge.org and www.mylifeline.org, it is important to communicate that profiles are not automatically 100% protected. Recommend to your patients that they explore their profile “Settings” page to familiarize themselves with the various levels of security available and then select the one that meets their needs. Privacy policies on these sites tend to be written in straight-forward language that is easy to understand; another reason why they’re a great alternative for anyone seeking the support an online community can provide.