Terminal Illness Lifestyle & Work

The Family and Medical Leave Act is a federal labor law that requires covered employers to provide eligible employees with up to 12 weeks of unpaid leave with assurance of job protection throughout the leave period. The law applies to all companies with at least 50 employees, public agencies, and public or private elementary and secondary schools. FMLA enables employees to take reasonable leave for covered medical and family reasons while upholding equal employment opportunities for everyone. Additionally, the law requires employers to maintain group health benefits for those employees during their unpaid leave. 

Per the law, employees who are eligible for FMLA are entitled to receive twelve workweeks of leave in 12 months for the following reasons: 

• A serious health condition that prevents employees from performing essential functions of their job 
• The birth of a child or to care for the newborn within one year of the birth 
• Providing care for the employee’s child, spouse, or parent with a serious health condition 
• Placement with an employee of a child for foster care or adoption and to provide care for a newly placed child within one year of the placement 
• Qualifying circumstances based on the employee’s spouse, daughter, son, or parent as a military member on covered active duty

Employees are also entitled to receive twenty-six workweeks of leave during a 12-month period if they need to provide care for a covered member of the U.S. armed forces with a serious condition or injury. This applies if the eligible employee is the service member’s spouse, daughter, son, parent, or next of kin. Ultimately, FMLA ensures that employees can take the time they need to care for themselves or loved ones without the risk of losing their jobs. Since its implementation in 1993, FMLA has had a significant impact on the lives of millions of employees and their families. 

Sources
“Family and Medical Leave (FMLA)”. U.S. Department of Labor. https://www.dol.gov/agencies/whd/fmla

Whether embarking on a dream vacation, visiting loved ones or moving to another location, terminally ill patients can travel to their desired destination with some planning and effort. However, healthcare professionals highly recommend that patients first check with their physician for medical clearance to ensure they can travel safely. There may be circumstances when travel is not advisable, dependent upon prognosis, symptoms, or decline. Some risks associated with travel for terminally ill patients include:

• Reservation revisions or cancellations due to complications or progression of illness
• Urgent medical care is needed while away from home
• Emergency medical evacuation in the event the patient needs to return home for specialized care
• Death due to stressors associated with travel or patient decline

Insurance Considerations

For patients receiving hospice care, benefits may be transferable and applied to another hospice company near a chosen destination. Staff often arrange to have another hospice company on standby if their coverage area does not extend that far. If there is no hospice provider available and a medical emergency occurs, the patient may need to go to an Emergency Room. In that case, the Medicare hospice benefit may not apply.

It is also essential that any terminally ill person who plans to travel checks with their insurer to determine if it will pay for care in the location they’re visiting, especially if traveling internationally. In all but three limited circumstances, Original Medicare does not pay for services received at a foreign hospital (a hospital outside the contiguous U.S. states, Hawaii, Alaska or the U.S. territories of Puerto Rico, Guam, the U.S. Virgin Islands, American Samoa, and the Northern Mariana Islands). Medigap plans may cover up to 80% of the costs you incur when visiting a foreign country but always check with your insurer to learn what’s covered and what may not be. Medicare replacement plans (also called Medicare Advantage Plans or Medicare Part C) typically follow the same rules as Original Medicare, so the cost of care provided in a foreign country, including drugs and emergency services, will almost certainly fall on the patient or their estate. 

Essential considerations when traveling by airplane

While air travel may be challenging due to cabin pressure and stressors associated with security, terminally ill patients can travel by air if no alternative options are available. Traveling with a companion who can manage all travel details during the patient’s trip is best. Also reach out to the selected airline to arrange special assistance before finalizing plans. This assistance may include oxygen, wheelchair transport, special boarding, seating, or meal accommodations. All medications and essential documentation, including a DNR if warranted, should always accompany the patient.

For those with exceptional challenges, companies like Medical Air Service or Angel MedFlight offer advanced medical care air transportation. These worldwide air ambulance services provide a flying ICU for patients with extensive medical needs.

Pre-existing conditions waivers for travel insurance

Since terminally ill patients have a higher risk of postponed, interrupted, or canceled trips, travel insurance may be ideal for protecting their investment. These policies can be expensive but may be worth the cost, particularly when planning to travel abroad.

However, it is important to note that many travel insurance companies do not offer waivers for pre-existing conditions. Companies offering a waiver generally require the patient to disclose all pre-existing conditions to guarantee coverage. This requirement helps to ensure a refund or partial refund should there be a trip delay, cancellation, or medical costs associated with a terminal diagnosis or comorbidities while away from home.

For example, Allianz Global, one of the largest insurers for travel, defines a pre-existing medical condition as follows: an injury, illness or medical condition that presented symptoms or caused someone to seek diagnosis, treatment by a doctor, or prescribed medications (new or additional) anytime within 120 days before and including the plan’s purchase date. Allianz Global Assistance does NOT cover pre-existing Alzheimer’s disease, bipolar disorder, or certain mental or nervous health conditions. Additionally, travel insurance will not pay for any non-emergency care, elective care, long-term care or experimental treatments the patient receives during their trip. 

Ultimately, it is always up to the consumer to understand what is covered and what is not when purchasing a travel insurance policy. It is also wise to note if there is a cap on the maximum amount of coverage offered. 

Sources

“A Guide to Travel Insurance for Cancer Patients”. Allianz. https://www.allianztravelinsurance.com/travel/medical/travel-insurance-for-cancer-patients.htm?accam=F202942&gclid=CjwKCAiAxP2eBhBiEiwA5puhNQNqlbTb1TA0VL4fd05xn3TQzKGGgJlgRYkF7nMorAzlqQQoOaMpnxoCkt4QAvD_BwE 

“Fact Sheet: Medicare Coverage Outside the United States”. Medicare.gov. https://www.medicare.gov/Pubs/pdf/11037-Medicare-Coverage-Outside-United-States.pdf

“Pack Safe: Oxygen – Compressed and Liquid”. Federal Aviation Administration. https://www.faa.gov/hazmat/packsafe/more_info/?hazmat=33 

“Can terminally ill patients fly commercially, or should an air ambulance be used?” Medical Air Service. https://www.medical-air-service.com/blog/can-terminally-ill-patients-fly-commercially-or-should-an-air-ambulance-be-used_8018.html 

“Advanced Medical Care and Air Transportation”. Angel MedFlight. https://angelmedflight.com/request-air-ambulance-medical-flight/

Whether your employer is required to provide time off for treatment and care depends on your state and local laws, as well as the number of employees in your workplace. Options such as the Family and Medical Leave Act (FMLA) are often helpful to employees who need to take time off to care for their own health or provide care for a loved one, but this provision only applies to unpaid, job-protected leave.  There aren’t any federal laws that require private employers to provide paid sick leave, but there are many states and local jurisdictions that have established their own paid sick leave laws within the past decade. Generally, these laws require employers to provide a designated amount of paid time off per year.

If your employer is required by state or local law to provide paid sick leave, the amount of time that can be used when you are ill will either accrue based on the number of hours worked per week or will already be accessible from a bank of sick time that refreshes at the beginning of each year. Depending on the laws in your area, this paid time off can be used to take care of yourself, someone in your family, or a friend. States and municipalities that have established mandatory paid sick leave laws include: 

• Arizona 
• California
• Colorado
• Connecticut
• Illinois 
• Maine
• Maryland
• Massachusetts
• Michigan
• Nevada
• New Jersey
• New Mexico
• New York
• Oregon
• Rhode Island
• Vermont
• Washington
• District of Columbia 

Ultimately, it is important to review if any laws in your state apply to paid sick leave and to ensure that you fully understand your rights. Most employers already have policies in place regarding paid time off and these are typically detailed in the employee handbook. If you have any further questions, a general best practice is to contact the human resources department at your workplace. 

Sources 

“Paid Sick Leave Laws by State for 2024”. Paycor. https://www.paycor.com/resource-center/articles/paid-sick-leave-laws-by-state/

“Sick Leave”. U.S. Department of Labor. https://www.dol.gov/general/topic/workhours/sickleave

Although the decision about how to spend your days when you have a life-limiting illness is a personal one, many people choose to work if they can. Not only does work provide an income, it also provides a sense of purpose, which can boost self-esteem. What’s more, many employees receive insurance coverage through their employer’s health plan that would be prohibitively expensive if they had to pay for it on their own.  

If you choose to continue working, talk to your doctor and your employer about your plans. You may need to modify your work schedule or change your job responsibilities for a while. Keep in mind, too, that your employer cannot fire you or refuse to accommodate your request if your doctor says you’re disabled and need these accommodations to return to work. Such actions are prohibited by the Americans with Disabilities Act. And if you’re seeking employment, you do not have to divulge your diagnosis to prospective employers unless it would have a direct impact on your ability to do the job you seek, according to the National Cancer Institute. 

If you cannot work due to your physical limitations and are currently employed, you may be protected under the Family Medical Leave Act (FMLA) of 1993. According to the American Cancer Society, this federal legislation requires that employers grant eligible employees up to 12 weeks of unpaid leave per year for certain family or medical reasons. The employer must maintain the employee’s group health benefits during the leave and, except in certain circumstances, the employee must be given the same job or an equivalent one when they return to work. 

Situations covered by the FMLA include the following: 

• The birth of a child and caring for a newborn
• Adopting a child or bringing a foster child into your home
• Providing care for an immediate family member such as a child, spouse or parent (but not a parent-in-law)
• Inability to work because of a serious health condition

You should also be aware, however, that not everyone is eligible for family medical leave under FMLA. In order to be eligible, you must meet these requirements: 

• You have worked for the employer for at least 12 months (the employment does not have to be continuous)
• You have worked at least 1,250 hours for the employer in the past 12 months (this is about 25 hours per week)
• You work at a location where the company employs 50 or more people within a radius of 75 miles (for example, if the employer owns a chain of six car dealerships within a 50-mile radius, and each one employees 10 people for a total of 60 employees)

All of these criteria must be met for the employee to be eligible. However, some exceptions for military personnel and other types of employees may apply. For example, according to the U.S. Department of Labor, public sector employees (e.g. employees of state, local or federal agencies) and primary or secondary school teachers are covered regardless of the number of people the employer employs. 

If you have questions about eligibility or need guidance in exercising your rights under FMLA, visit the Department of Labor, Wage and Hour Division or call its toll-free information and help line at 1-866-4-USWAGE (1-866-487-9423) between the hours of 8 a.m. and 5 p.m. in your local time zone. 

Sources

“Family Medical Leave Act”. American Cancer Society. https://www.cancer.org/treatment/finding-and-paying-for-treatment/understanding-financial-and-legal-matters/family-and-medical-leave-act.html 

“Coping with Cancer/Going Back to Work”. National Cancer Institute. https://www.cancer.gov/about-cancer/coping/day-to-day/back-to-work 

Fact Sheet #28: “The Family and Medical Leave Act”. U.S. Department of Labor. https://www.dol.gov/whd/regs/compliance/whdfs28.htm