Even LTC Pros Have Trouble Navigating the System

It’s no secret that older adults and their families find our long-term care system hard to navigate. Often in crisis, needing to make big decisions quickly following an accident, diagnosis, or sudden decline in health or abilities, they confront a patchwork of providers with no obvious way to tell which ones deliver quality care. More often than not these care seekers feel lost and confused. They can end up with care they’re not happy with. 

What may be surprising is that even the experts — people who work in the health care industry — are not immune. The two stories that follow were shared at a recent consumer panel hosted by CareScout that included professionals as well as non-professionals. Both stories provide further proof that our long-term care system needs better ways to help care seekers identify providers of quality care. 

Joseph is an insurance broker who sells long-term care insurance coverage. His long-term care journey began at the end of another trip several years ago, when he and his wife were winding down a vacation on an Alaskan cruise.

One day the ship docked in Victoria, British Columbia and they went to tour the city on foot. Then it happened. “I tripped on a curb,” said Joseph. “I fractured a bone in my left leg I didn't even know I had.” 

Joseph finished their vacation in a wheelchair. When he and his wife returned home, they sought home care for Joseph, who wouldn’t be able to walk for several months. 

That’s when the real journey began — the journey to find good, quality care. 

It should have been easy for Joseph. “I sell long-term care coverage,” he said. “So I know what the policies are supposed to cover and what you have to do.” Being on the other side as a care recipient was unfamiliar territory, though. “It’s a whole different ballgame,” said Joseph, adding that he felt helpless and frustrated during that time. 

When they arrived home from vacation, Joseph and his wife had to arrange quickly for a caregiver to come to the house. “Fortunately, because of my networking, I knew a number of care-providing companies and was able to arrange for someone on the spot,” said Joseph. He called an industry acquaintance he trusted and a caregiver came to his home that very evening. 

That caregiver didn’t work out, however. She “basically occupied space,” Joseph said. “She was on her phone and it clearly was not an appropriate level of care. She had something other than taking care of me top of her mind.” 

So Joseph left that agency. Using his wife’s contacts — she works for a caregiving company — they found a caregiver from another agency, and struck gold. 

“He was fantastic,” Joseph said of this second care professional. “He was all the things that you really want a caregiver to be.”  

Looking back, Joseph realized that despite his industry know-how and connections, he had no real way to tell which providers were the best. 

“When you go online and you're looking for ratings … it’s trial and error,” he said. “What's a  reliable rating source? Who do you call?”  

For Joseph, the second time was the charm, but he knows it could have been otherwise. “When you’re searching for a caregiver, it’s a crapshoot,” he said. “It's blind luck if you get someone good.” 

Philip’s father was the picture of health, biking five miles a day. When a medication error caused bleeding in the brain, however, his health suddenly deteriorated. Philip and his family found themselves scrambling to find 24-hour post-acute rehabilitative care.  

It was an enlightening experience for Philip, who is regarded as a health care industry authority and has worked with the provider community as well as payors. It was Philip, in fact, who led the effort at CareScout to build the CareScout Quality Network, the first provider network to focus on person-centered care. His family’s journey through the long-term care system made Philip even more adamant that such a network is desperately needed.

Their journey seemed to have a promising start, with the entire family on board. “I have multiple siblings and my mom, and we were all involved,” said Philip. Since four out of five family members lived in a major urban center, his family chose a nearby nursing center for Philip’s father. It happened to be next to a teaching hospital where one of Philip’s sisters works in clinical administration.

Philip and his family thought this would be ideal. “We could visit Dad during lunch,” he said. “We thought, ‘It's going to be great because it's near most of us and next to an academic medical center.’” The nursing center had also received high stars from the Centers for Medicare & Medicaid star rating system.

But their father’s experience of care there was not how the family wanted their father treated. He suffered falls frequently and the family was very worried about him. “It was a heartbreaking situation,” Philip said.

The family moved Philip’s father to a community center located nearer to Philip’s mother. This center had a decent star rating but no one in the family had ever heard of this provider. “We thought, ‘Wow, how can they be that good?’” Philip recalled. “It's embarrassing because that was our own bias toward the brand we knew and size of center versus a local community center.” 

As it happened, the second center provided excellent care — stellar, in fact. Philip’s father was safe and comfortable, and Philip and his family could finally relax.

It took persistence, but Philip and his family were able to secure for his father what amounted to person-centered care. 

“The first place he was in seemed very conscious of stars and safety measures like restraints and all those things that are tied to revenue because of regulations,” said Philip. “But it really ended up not being what the patient or family needed.”  

Like Joseph, Philip and his family found what they needed on their second try. It was a humbling experience for an industry insider, though. “We were caught pretty unaware,” Philip said, looking back. “I had to navigate the long-term care system via a really bumpy path.”  

With the creation of the nation’s first provider network focused on person-centered care, Philip has turned that humbling experience into something to be proud of: a smoother path for future long-term care seekers, and an aging care experience that is dignified, connected, and fulfilling.

At CareScout, we’re spearheading the effort to make person-centered care the standard for quality in long-term care. With the CareScout Quality Network, we're also focused on making it easier for care seekers to find providers committed to delivering person-centered care. Stories like these make the need for these efforts abundantly clear. When even industry professionals struggle with our system, it’s clear that something needs to change.

This article is part of a three-part series created from our Consumer Voices panel discussion. Read the other articles:

• What Your Care Clients Want You to Know: Read Insights from Actual Customers

• 10 Tips from the Long-Term Care Trenches