We all know that we may get sick some day. Even if we eat well, exercise regularly, and make responsible choices, at some point we may find ourselves coping with a car accident or a long-term illness. Life is unpredictable.
When we face injuries or serious illness, we know that we're likely to need treatment in a hospital, followed by a period of recovery. We may need continuing physical therapy or ongoing treatments. Since that's a typical pattern for so many conditions, you'd think a rational health-care system would be set up to offer support throughout the whole process of illness, treatment, and recovery.
Over time, the US health-care system has evolved in several separate organizations or systems. Health experts call them "silos." Hospitals, primary care docs, specialists, home health agencies, skilled nursing facilities. Each of them has its own vocabulary. They have wildly different fee schedules and financial incentives. The payment system generally doesn't pay extra for the time and effort needed to gracefully transition patients from one setting to the next ... so, it comes as no surprise, the transitions are clunky.
"The US health-care system hasn't made sense for decades, and anyone involved in it knows that," says Amanda Twiss, an expert in health-care analytics and the founder of Outcome Concept Systems Inc., which specializes in gathering and analyzing data on home health. "Right now the incentives are for various health-care providers to transfer patients rapidly to the next provider, with very few integrated transitions of care. We must have better management of transitions, and increased alignment of incentives to do the right things, particularly for our chronically ill patients. This will happen, but the form it will take may vary."
It's easy for Twiss to envision the way that the health-care system ought to work. "If incentives were aligned, there would be more population-based health care. The choice of a setting would be more neutral. Whether home-based care or a long-term care facility or a hospital, you would do whatever was most appropriate for the patient's needs."
The Accountable Care Act includes incentives and pilot projects designed to shift the system toward an integrated continuum of care. In addition, experimental initiatives are fermenting throughout the health-care system. There are many different ways to reach this goal, Twiss says, and runs down a list of alternatives: "Some hospitals are now investing in call centers and support services post-discharge, because they see it affects their ratings on consumer satisfaction surveys," she says. "Various state Medicaid agencies are driving value-based purchasing in long-term care. Recently at a conference panel one hospital mentioned their discharge planners are now looking closely at home care providers' quality and outcomes, and the hospital is starting to be more discerning about where they send their patients."
Meanwhile, as consumers, we may or may not have access to innovative health-care systems that attempt to manage care transitions more effectively. Twiss's advice: seek additional information. "Go to websites such as Home Health Compare and Nursing Home Compare and look at the overall quality of local organizations," she says. "They have scores on quality measures posted online. You can look at the results of satisfaction surveys." In addition, she recommends asking for opinions and personal experiences from your physician and from other people you know, just as you would do when making any significant decision.
Prepare Ahead of Time, Research Options
Howard Gleckman, the author of Caring for Our Parents, has heard many stories from family members who weren't prepared for sudden health-care decisions. "Suppose you're the only child of a widowed mother. She's been living at home independently until she falls and fractures her hip; then she's in the hospital for a few days. One morning you're visiting her and the discharge planner says, 'great news, your mom's going to be discharged by two pm today.' You have a choice, you can have her discharged anywhere you want, but you have no idea what to do."
The hospital discharge planner is often a social worker, sometimes a nurse. She comes in each morning and there's a stack of folders on her desk of people who are supposed to be discharged that day. "Discharge planners are in a very difficult situation," Gleckman says. "They are expected to discharge patients rapidly, but they usually don't have very much information about the patients they are discharging, or about the various settings the patient could be discharged to."
His suggestion: start exploring possible care options at the very start of hospitalization. "Most hospitals have a social worker on staff, not just for discharge planning but so people can begin to work with them as soon as a family member is admitted. So, go talk with them," he says.
Often the social worker will have some idea of how long a hospitalization is likely to last. She'll be able to analyze the potential next steps. Can the patient go straight home? That will depend on many factors: the patient's condition, what sort of continuing care is needed, the physical environment at home, whether friends or relatives are available to help. Home health agencies can send in trained nurses and physical therapists to help people recover in their own homes.
Or, it may be that a short or longer period of nursing home care or assisted living is the most appropriate next step. In that case, the social worker should be able to make suggestions to get you started. "In most communities there are a number of knowledgeable resources available to you," Gleckman says. "You don't want to just get a list and start walking from nursing home to nursing home. There should be a local Area Agency on Aging; they are of variable quality, and some of them are quite good. There are private not-for-profit information referral services, often religiously affiliated, but they will help anyone. Just start by googling 'senior services' and the name of your town."
Since these days so many families live many miles apart, a new profession has evolved to help people care for their aging parents: the geriatric case manager. He or she is a trained social worker or nurse with experience in evaluating care options and making recommendations to fit a particular situation. "It depends on where you live, but generally it costs $350 to $500 for someone to do this additional assessment. They recommend specific places if someone needs skilled nursing care or assisted living," Gleckman says. "The advantage here is that you're getting an expert opinion from an objective source. People sometimes recoil when they hear the fee ... but compared to the potential cost for a long period of care, it is trivial."
Before making any final decisions, Gleckman recommends visiting a long-term care facility and sensing the atmosphere. "Forget the fancy lobby," he says. "Some of the best nursing homes I've ever been in are a bit shabby." It's not essential to talk with the director of nursing or the marketing person, he suggests, but "you do want to pay close attention to the aides, because they are the people who do the actual care."
Gleckman recalls one particular visit to a nursing home. "A nurse's aide offered to show me the way to the person I had come to visit. As we walked down the hallway she stopped and hugged one of the residents and then another, and warmly asked them how they were doing. At that moment I said to myself, 'If my mother needed a nursing home, this would be the one.'"
In the neighborhood where I live, there happen to be two skilled nursing facilities, only a few blocks away. I find myself thinking that it wouldn't hurt to stop by sometime soon, get acquainted, learn a bit about the way they function, their specialties. To start learning more about these resources now, just in case I, or a friend or family member, need to rely on them someday.
Home Health Compare: www.medicare.gov/HomeHealthCompare/search.aspx.
Nursing Home Compare: www.medicare.gov/NHCompare.
Forty-three states have Aging and Disability Resource Centers. Visit www.adrc-tae.org.
Area Agency on Aging (AAA): call 800-677-1116 or visit www.eldercare.gov.
To locate a geriatric care manager, start with the National Association of Professional Geriatric Care Managers at www.caremanager.org.
GleckmanH. Caring for Our Parents: Inspiring Stories of Families Seeking New Solutions to America's Most Urgent Health Crisis. St. Martin's Press; 2009.
Elaine Zablocki has been a freelance health-care journalist for more than 20 years. She was the editor of Alternative Medicine Business News and CHRF News Files. She writes regularly for many health-care publications.