At some point in his or her journey, almost every family caregiver faces the challenge of a loved one's fast transition from a hospital setting to their home or another health care facility. When patients are "treated and streeted," overworked, overburdened hospital discharge planners, social workers and even physicians rarely spend sufficient time explaining what comes next. A caregiver may be handed a list of home and community-based services or information on where a loved one is being transferred, but, as the hospital doors slide shut, little explanation on how to proceed.
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When caregivers enter this new world, many flail in the dark, wading through piles of insurance paperwork, struggling to comprehend billing information and scanning lists of home-care services with no way to judge which is best. We assume various physicians, specialists, labs and facility administrators communicate and share information, but too often they do not, forcing caregivers to repeat exhaustive paperwork at each office visit and inform health-care professionals of critical details about prescribed medications and past tests and procedures.
"The caregiver becomes the only continuity point in a patient's care," says Carol Levine, director of the Families and Health Care Project at New York's United Hospital Fund. Levine's group recently helped launch the website Next Step in Care, which offers helpful checklists and other information about these hospital handoffs, also known as care transitions. But even when armed with checklists, the time and effort required to do research, make informed decisions and ensure that costs are reasonable, or at least covered by insurance or through other benefits, can place extraordinary demands on a patient or family caregiver. The stress inherent in the system can be daunting and frustrating.
Patient Navigators to the Rescue
Fortunately, a new breed of caregiving avengers is here. They are called patient navigators, and they can coordinate care, unearth cost savings and provide families with confidence and a sense of calm. The services these professionals perform vary based on the individual providers and the agencies they represent, but typically fall into three categories:
- Hospital Handoff When your loved one leaves the hospital, he or she may need help with follow-up care, whether it will be at home or in a new facility. If a follow-up MRI is required, will the costs be covered by an insurer? Is a newly prescribed medication on the insurer's list? Patient navigators can handle this otherwise time-consuming research and handle fact-finding.
- Living Arrangements Navigators can give you a professional assessment of what services, like meal preparation or housekeeping, may be needed to enable your loved one to stay at home. If living at home is not a viable option, a navigator can offer guidance on alternative arrangements that meet your loved one's budget, lifestyle and care needs.
- Insurance and Medical Billing Staying on hold with insurers, completing complex claim forms and managing bills can become a full-time job for caregivers who lack experience with such paperwork. Patient navigators can attack and cut down the mountain of paperwork so caregivers can focus on quality time with their loved one.
"In 2005 an avalanche of health care challenges fell on me when I was diagnosed with a rare form of cancer called thymic cancer," says Alan Blaustein, chief executive of CarePlanners, a national patient navigator agency. "It took several months navigating through different specialists, tests and inaccurate diagnoses to find out I had cancer.
"But even after my diagnosis, I discovered firsthand that there is a culture in our health care world where the various professionals around the patient often do not communicate, do not cooperate, can be careless and are anything but the patient-centric model we are led to believe exists."
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Blaustein and partner Nancy Snyderman, surgeon and chief medical editor of NBC News, launched CarePlanners to connect patients and caregivers with the services of registered nurses, social workers, Medicare experts and insurance and billing specialists who can help them manage the complexities of health care. The company offers flat-fee services a la carte as well as monthly subscription plans. It also works with employers to arrange services to support caregiving workers and it provides expert aid to individuals aging in place through such networks as the Village Movement.
Client Charlotte Stern recalls her son panicking during the recent meningitis scare, with cases traced to contaminated steroid shots for back pain distributed by a Massachusetts compounding firm. Stern, a spinal stenosis patient, receives such shots regularly. But before her son could pick up the phone to begin tracking down the batch from which Charlotte had been treated, a CarePlanners patient navigator had already found out that her injections were safe. "It took a tremendous weight off our minds," she says.
Fees for patient navigators can range from $75 to $200 per hour depending on the service, so caregivers need to be wary of those who hang out a shingle but may not have the necessary experience or expertise. Always ask to see professional credentials and solicit references.
Anne Llewellyn, head of the Professional Patient Advocate Institute, a training and trade association, estimates that between her group and others like the National Association of Healthcare Advocacy Consultants and the Alliance of Professional Health Advocates, there are approximately 1,000 credentialed patient navigators in the United States today.
"The field is still emerging," she says, "but it's typically below the radar for most consumers today." She expects that will change rapidly, though, as more boomers seek specialized services to allow them to age in place and manage their health-care needs.