Navigating a Chronic Illness: Here’s What Caregivers Should Know
When someone is diagnosed with a chronic or life-altering illness, the diagnosis doesn’t just affect them – it affects their loved ones as well. For loved ones who take on the role of primary caregiver, the impacts can be significant.
Among the many duties and responsibilities family caregivers may shoulder is patient navigation (sometimes referred to as care coordination) – acting as an integral part of the care team to help steer their loved one through a complex health care system. They may help their loved one navigate insurance and legal issues; schedule appointments; arrange transportation and childcare; make health-related home modifications; manage medication schedules; and seek financial, emotional, and social support for their loved one and themselves.
Paola Zambrana
“After a diagnosis, family caregivers are often thrown into the role of de facto care coordinator overnight, even before they have processed the news,” said Paola Zambrana, Director of Engagement & Project Management, Caregiver Action Network (CAN), the nation’s leading family caregiver organization.
Zambrana noted that family caregivers typically don’t need to become medical experts in their loved one’s disease or condition, and they aren’t expected to understand the technical nuances of medical billing codes. However, they should educate themselves about symptoms, treatment options, and disease progression so they know what to expect and can better empathize with and guide their loved one throughout the continuum of care.
“Information overload is real,” she cautioned. “Caregivers are often flooded with data, but they receive little help translating it into decisions that need to be made. On the flip side, there may be a distinct lack of actionable information in the case of rare or complex diseases, which sometimes take months or years to properly diagnose.”
Whether family caregivers are facing an overload of information or a dearth of information, CAN stands ready to help, with practical support and information designed to build family caregiver confidence and capability and improve their quality of life by reducing their day-to-day stress and financial distress.
Advocating for the Patient by Advocating for the Caregiver
Zambrana suggested that one of the first things a family caregiver should do is to let their loved one’s health care team know that they will be involved as a day-to-day care coordinator. They should request to be kept abreast of care-related decisions and deadlines so they can advocate for their loved one as a “voice” of the patient.
“Unfortunately, caregivers are not always acknowledged appropriately by care teams,” she added. “Despite how essential caregivers are, some health systems may not be prepared to work with them. Processes, guidance, and timelines are often unclear.”
According to Zambrana, family caregivers should also immediately identify provider care team members responsible for care coordination and patient navigation. They may have titles such as nurse navigator, social worker, client manager, or oncology navigator (for cancer patients). These professional navigators can help to reduce the family caregiver’s burden and lighten their emotional strain and exhaustion by managing appointments, referrals, financial and insurance issues, and questions for the clinical staff. In addition, some insurance companies have medical managers who can help the caregiver navigate issues like pre-approval and prior authorization requirements.
“Remember that caregiving and patient navigation needs don’t take a break after 5 p.m., on weekends, or during holidays,” she said. “Caregivers should therefore identify after-hours support like nurse lines, help desks, or e-nurses available through their care team.”
Navigating Through Financial Toxicity
Financial toxicity has become an increasingly urgent challenge for patients and families living with chronic or life-altering illnesses. The term “financial toxicity” was coined in 2009 to describe the impact of cancer treatments on patients. Since then – and despite significant medical advances – rising treatment costs, coverage gaps, and ongoing non-medical expenses continue to create significant stress, instability, and real barriers to care.
“Caregivers often underestimate the financial impact a serious diagnosis can have on the patient and themselves,” Zambrana said. “Over half the calls we received into the CAN Caregiver Help Desk are related to finances.”
CAN’s website offers a variety of financial and legal tools and resources for family caregivers, including:
- Advice on how to become a paid caregiver
- A checklist of essential legal and financial documents
- A glossary of financial terms
- Information on advance directives
- Food assistance information, including information on local food banks, Meals on Wheels programs, and SNAP benefits
- Key questions to ask an elder law attorney
- IRS tax tips for caregivers
- Discount programs for medications, including discount drug cards, Extra Help with Medicare prescription costs, and drug price comparisons
Caregivers looking for financial assistance can also reach out to charitable patient assistance programs (CPAPs), like the HealthWell Foundation, which offers free grants to cover the cost of medication copays, insurance premiums, and other out-of-pocket costs relating to treatment.
“Financial literacy is one of the biggest hurdles caregivers face,” concluded Zambrana. “In addition to the direct support and resources we offer, we work with employers and other non-profit organizations to help educate caregivers and the public at large about this important issue. Throughout the year, we will be further building our financial literacy and well-being program so that caregivers are well supported in the workplace with flexible work arrangements, assistance programs, and leave policies to help reduce financial toxicity as they juggle what are essentially two full-time jobs.”
