Joanne Lynn, M.D., leads the Center for Elder Care and Advanced Illness at the Altarum Institute, a Washington, D.C.–based, nonprofit, health system research and consulting firm. Her work focuses on identifying and promoting models of care that enable patients with advanced illness and disability to live comfortably and meaningfully at the end of life. Quality Matters asked Lynn how the U.S. health care system could do a better job of caring for these patients.
Quality Matters: How do you see traditional medical offices and hospital delivery systems failing patients with advanced illness?
Lynn: Most hospitals and offices are not built for people who are having trouble moving around or dealing with new people and new situations. Our care system is designed around the hopes and fears of 50-year-old men scared of having heart attacks. The system works reasonably well for them, but for frail, elderly patients, it's very problematic. Hospital personnel make a tremendous number of errors—particularly when there are complicated medication schedules and patients are off the floor getting other services. Doctors' offices are also far from ideal. A family member often has to take off work and spend a tremendous amount of effort to get the person in the office, by which time they are worn out, and then the physician may only spend 10 minutes covering one or two issues.
Quality Matters: As one solution, you've advocated bringing medical services to frail patients in their homes, in much the same way other organizations bring meals to their homes. How might this improve quality?
Lynn: It would help to build care plans that reflect the priorities of patients and their living conditions, which we don't spend a lot of time focusing on now. We say this person had a heart attack and they need to be on these three medications. We don't ask whether the person can get water to take pills or get up steps to get home. No surgeon would let a person move from the operating room to the recovery room without making sure the next care team knows what's going on, yet we send people out who are almost as sick with little support. They do badly and end up with a lot of costs that could have been avoided.
Quality Matters: Is there a general misperception of how sick this population is?
Lynn: I think so. People who have not been to patients' homes think that anyone that sick would be in a hospital or at least a nursing home, but people at every level of severity of illness are at home: people with profound dementia, patients with shortness of breath who are going to end up requiring sedation as they die, people on all manner of medications—they all are being managed at home. The result is half of all family caregivers now manage a treatment or device that is traditionally only managed by licensed personnel. These patients are really fragile. Even for those whose only problem is profound dementia, that's a really big problem.
Quality Matters: What are impediments to spreading programs that now exist? Is it solely reimbursement?
Lynn: I think it is a combination of inattention to the business aspects of this work and very low reimbursement rates. A doctor who goes to see a patient at the end of day after normal office hours is doing it as act of charity or loyalty to a patient but they are not meaning to make a living at it. Providing care at home routinely requires a new business model, which is feasible if you recognize that the number of patients who will need at-home care is going to double in the next 15 to 20 years. There are models that work, like House Calls for the Homebound (see sidebar), which provides team-based care to patients at home. They have been strategic in maximizing the use of doctors' time. You can't have doctors spending time finding a place to park the car. A medical assistant can do that and can also collect medications in the house, check whether anyone is taking the trash out, and perform a home safety check. Another strategy is to concentrate services in geographic regions so that everyone who needs at-home care is seen by one doctor.
Quality Matters: How does Medicare reimbursement and policy factor in?Lynn: Medicare Part B reimbursement is not adequate for a number of reasons, and as a result most house call programs require some kind of subsidy. One here in Washington requires $1 million a year from its sponsoring hospital. Very efficient business practices can overcome that, but most physician office practices do not have the skills needed. The other thing that is a real threat is that periodically a fiscal intermediary sets up a screen that catches doctors who are doing home visits. The intermediaries are skeptical that the doctors are having longer visits because they are seeing sicker patients. These doctors receive individual scrutiny and have to send in all their records. They also may go two or three months without getting reimbursement. Obviously, few are set up to take that risk, so one round of fighting with the intermediary puts many nascent efforts out of this business.
Quality Matters: So how do we go about measuring the quality and value of care provided in home settings?
Lynn: Some measures of quality for homebound elders are obvious and already in place in home care programs, such as tallying pressure ulcers and their severity, or tallying advance care plans. But we really need to measure some population experiences—such as whether spend-down [of income and assets to qualify for Medicaid] is delayed, whether caregivers are feeling well supported, whether patients and caregivers have confidence in their care arrangements, and the rate of falls. And of course, we really need measures of disability across time and setting. In terms of value, there's much to do in measuring elements that matter such as utilization of emergency departments (EDs). One trip to the ED, counting the ambulance ride both ways and all the tests and consultations, is usually at least 20 times more expensive than a physician visit at home, yet we tolerate use of the ED for most seriously ill elders who cannot really see a doctor in the office. We should probably be targeting improvement activities and encouraging home care in places where the rates of ED use are high, which is most of the country.
Quality Matters: Fraud and abuse related to home care are often a concern in policy discussions. How do you distinguish between appropriate and inappropriate care?
Lynn: First, the intermediaries need to know how to see that a patient is very sick and probably disabled—from the claims, from the information now reported to the Centers for Medicare and Medicaid Services if the person received nursing home or home care agency care, or directly from the physician or client. A physician should not be billing for home visits for people who are fully capable of coming to the office, but the physician should not be penalized for seeing people who are very sick and disabled at home. Many of the reviewing physicians or nurses have not worked in home care or nursing home care and simply do not know how fragile and disabled so many elderly people are. Second, video devices are now so inexpensive that we could start documenting the situation in short clips for skeptical reviewers. Also, Medicare could develop population-based estimates of expected home care recipients and target investigation in locales where the boundaries seem to have become too relaxed and unexpectedly large numbers of people are getting their physician care at home.
Quality Matters: Many providers working in this area say the social needs of these patients are enormous. How might we address them affordably?
Lynn: We have pondered this a lot. Our proposal is to create a special-purpose accountable care organization (ACO) that serves only the frail elderly and aims to serve all in a geographic region, which would enable the ACO to route the savings that result from more appropriate and efficient care to social services. Right now, many of the interventions that doctors do routinely and without a whole lot of thought are either wasteful or harmful. Why send a frail old lady for a mammogram? Why continue statins for a profoundly demented person coming to the end of life? It's also important to realize that if you work vigorously to make the care system match people's preferences, you save a lot of money. In fee-for-service business design, that money does not get paid. If instead, we took at least some of those funds to support adapted housing, family caregiving, better nutrition, and other services not covered by Medicare, we should be able to improve care at a lower per capita cost.