The Need for a Roadmap: Navigating Patients through the Complex Terrain of Home Care in the U.S.

“I don’t think I can manage all of his care anymore,” my patient’s wife whispered to me as she buttoned his shirt for him on the exam table. The tremor in his hands had worsened recently, despite a higher dose of medication.

This wasn’t the first time we talked about this. Four months ago, we spoke after he fell in the middle of the night on the way to the bathroom.

“I think you would benefit from some help at home,” I said to them on the telephone the next morning.

“Really? Last night felt like bad luck,” my patient said slowly.

“Maybe. But I’ve noticed that you’ve been slowing down and your balance is worse,” I said.

She understood.

“How would you feel about someone coming to help… now and again?” she asked him softly. “We could find someone you feel comfortable with?”

I nodded through the phone while I waited for his response.

My patient is a 77-year-old retired computer programmer. He fiercely values his independence, which is waning. I knew this decision would be hard.

She went on, but now with questions for me.

“Doc, if we got someone to help, how much will insurance cover? How do we find an aide? Do you start the process? Should I call someone? Is there someone who will walk us through our options? It’s very confusing.”

I took a deep breath in and exhaled into the phone.

The truth is, as a primary care physician, I had heard all these questions before. Over, and over again.

“A lot of factors go into what services you could get, and what might be covered. How about I start the process and we speak in a few weeks?”

We agreed and hung up.

I documented the issues in the chart and completed the paperwork. But I didn’t need to wait three weeks to know that the process would lead to more questions than solutions.

The reality is that getting patients the care they need at home in the U.S. is complex and under- resourced. Most people do not plan ahead. Rather, they think about home care after their health deteriorates or a crisis ensues. Doctors sometimes suggest it, but office visits are short and few of us have been formally trained on the topic. Even when doctors are equipped, we lack the bandwidth to walk our patients adequately through the maze.

My patient has Parkinson’s disease, chronic kidney disease, and vision problems. He has Medicare parts A & B and a Medicare Supplement Plan. He needs help with bathing, dressing, and preparing meals. This type of assistance, known as personal care, is provided by family, but if additional support is needed it can be provided by a paid home care worker (including health aides, attendants, or personal care aides).¹ Personal care alone is not covered by Medicare, but rather by Medicaid, and only for those who meet financial criteria. Medicare provides skilled home health care (including intermittent nurse visits, physical and/or occupational therapy (PT/OT), speech, and/or home health aide services) up to 60 days for an episode. To qualify a patient must be under a physician’s care, homebound, and require skilled nursing and/or PT.² My patient may qualify for skilled home health care for a short period of time, but it would not meet his ongoing personal care needs. As such, he will have to pay out-of-pocket for a home care worker (ranging $10-$35/hour by state). However, I doubt he could afford this over a sustained period. All this to say, my patient is a prime example of how obtaining home care is not straightforward. Additionally, many families will encounter a mismatch between what they need and what they can afford.

Navigating care is not just complicated; it is stressful. More than three-quarters of those age 50-plus want to age in place.³ To do so, many will require skilled and personal care . And yet, a recent national survey conducted by NORC found that 53% of older adults found the process of navigating long-term care to “cause anxiety” and 52% found it “frustrating.”⁴ This is unfortunate but not surprising, as prior studies have found that navigating home care is challenging for patients and family caregivers.⁵ Other studies have found that physicians often feel limited in their knowledge and understanding of home care. Although social workers or care managers can potentially help, few practices have sufficient staff to handle the need.

Because home care is challenging to coordinate and plan, one solution is to help patients and their families begin planning earlier. The advance care planning (ACP) framework can potentially serve as a model for how to improve engagement in early planning, as there are similarities in planning for ACP and home care. Perhaps the most prominent is the delay in planning for future needed care, which occurs both for patients with advanced illness needing ACP and aging adults needing home care. Reducing delays in planning could afford patients and their families the time to learn about their home care options and navigate a complex system. For this to be a useful model, it is critical to look to the portions of ACP that are effective at helping patients and their loved ones plan, namely, through iterative discussions about care options, needs and preferences, and care planning.⁶ One practical way this could take shape is by providing “navigation” hubs to guide home care planning, an item for which there has been a recent call.⁷

For this model to work, investment and resources are needed to support it. Despite a rapidly aging population, formal infrastructure to support patients and their families navigate, obtain, and pay for home-based care is lacking. Federal legislation, including stimulus money under the American Rescue Plan Act, is currently providing some funding for states to expand and support Medicaid-funded community and home-based services, but it is not indefinite. And the recently proposed, “Better Care Better Jobs Act,” would enhance Medicaid funding for home care and strengthen the caregiving workforce, if passed. These are steps in the right direction, especially if the latter is passed. And yet, more is needed. For example, no legislation has been proposed to help families navigate or coordinate the process of obtaining and managing care. According to the NORC survey, 63% of older adults want to know more about the types of services available and 69% felt it extremely important they receive information on how to pay for care. Although Elder Care locators and some tech-based platforms exist, few are built with the end user(s) in mind. Centralized and community-based resources, as well as navigation systems that can provide education and connections to care, are warranted.⁶

“I don’t think I can manage all of his care anymore,” she whispered to me while buttoning his shirt for him on the exam table.

“I agree,” I said, my eyes wandering to the stack of forms I completed since our last call.

I looked back at them, and then down.

We must do a better job to help patients and their families get the care they need in the home. Why haven’t we built roadmaps to guide them, and us, as their doctors? We need a better way forward.