Zigzag Care

I’ve been debating whether or not to comment on the recent article in JAMA Internal Medicine about the importance of continuity of care for patients with dementia. Continuity seems so obviously essential for patients in general and patients with Alzheimer’s disease or other forms of dementia in particular, that it scarcely seems worthwhile studying. But then I read the accompanying commentary in the journal by Eric Larson, Vice President of Research at Group Health, who said the article addressed “what I believe may be the most important but often neglected feature of ongoing care in patients with dementia—continuity of care.” Maybe the need for continuity was obvious to me but not to everyone, so I decided to chime in to the amen chorus.

The study authors looked retrospectively at a sample of fee for service Medicare patients from 2012 who were over age 65 and had a diagnosis of dementia. They classified them as having varying degrees of continuity of care depending on whether a large share of their doctors visits were to a small number of clinicians. Then they measured health care utilization over a one-year period. After correcting for socioeconomic conditions and comorbidities, they found that the low continuity dementia patients had more Emergency Department visits and hospital admissions than the high continuity patients. They also cost the system $24,371 per year compared to $22,004 per year, a statistically significant difference.

The truth is that we already know that coordination, integration, and continuity matter for frail older people and that what’s true for the physically frail is also true for the cognitively frail. The Guided Care program, for example, which features home geriatric assessment and ongoing care by a nurse, produces superior outcomes to conventional care in managed care settings, though not in fee-for-service Medicare. The GRACE program (Geriatric Resources for the Care and Assessment of Elders), a program intended for low income seniors, utilizes a team that provides consistent care, and saves money while improving care. And the UCLA Aging and Dementia Care Program for Comprehensive, Coordinated, Patient-Centered Care, which is specifically targeted to people with dementia, also uses consistent care with resulting improved well-being and lower costs. It operates within fee-for-service Medicare by essentially adding a layer of nurse-directed coordination and continuity to what might otherwise be a chaotic system. This program is associated with increased quality of care for patients with dementia, but health care utilization and costs have not yet been evaluated.

The real contribution of the new JAMA Internal Medicine study is not showing that continuity of care is important for patients with dementia. Its real contribution is the observation that continuity of care is difficult to achieve within fee for service Medicare. The vaunted idea of maximal freedom of choice—in this case, the freedom to go to different physicians who often work within distinct health care systems—is at odds with the approach we have come to learn makes most sense for frail, older individuals, including those with dementia. If frail patients are to have the best possible care—care that is congruent with their goals of medical care, that maximizes their quality of life and level of functioning, and that at the same time is “high value” (provides the best outcomes per dollar)—they need some kind of managed care.

We make trade-offs all the time. We make trade-offs when we pay a higher price for an energy-efficient car to save on gas in the future and when we opt for a small house in exchange for access to a better school system. We make trade-offs when we choose a cheaper, generic drug over a pricier brand-name drug even though advertisements and acquaintances insist the brand name pill is superior. We need to make similar trade-offs when deciding on medical care in old age. But to make a wise choice, we need to know that we are frail (or our caregivers need to know that we have dementia) and we need to know that managed care is better care.

Lament

My mother’s doctor runs a concierge practice—he charges his patients several thousand dollars a year on top of what they pay Medicare ostensibly so that he can provide a more personalized type of medical care. He is more available, provides more coordination of services, and has a nicer office than he did when he was part of a conventional group practice. I’m not fond of concierge medicine because it creates a two-tier medical system and it worsens the already existing shortage of primary care doctors. But I have to admit that my mother, who is 90 years old and is in fairly good health (she proudly points out that she takes only three medicines a day, one of which is a vitamin), has gotten the attention that she deserves from her doctor. He’s smart, caring, and competent. I figured he was doing a decent job providing medical care to octogenarians and nonagenarians even though he is an internist and not a geriatrician. Now I’m not so sure.

What changed my mind is that my mother needed a few forms filled out for an independent living complex to which she is applying. It asked the usual questions—about diagnoses, medications, and vital signs. But it also asked another kind of question that is equally important for a facility trying to decide if my mother is able to live on her own, with just one communal meal, weekly housekeeping, and on site social activities. It asked about what we in geriatrics call functional status: her ability to walk without an assistive device (she needs a cane or, for uneven terrain, a walker), her vision (she wears reading glasses as do almost all people her age), her hearing (she wears hearing aids, or at least she has a pair and some of the time she wears them), and her memory (she’s a bit forgetful). And it inquired about advance care planning: health care proxy designation and goals of care. Her physician didn’t know the answers to any of these questions. Why not?

My mother’s physician evidently doesn’t ask my mother about these issues unless she brings them up. He apparently doesn’t routinely test her gait or evaluate her memory or check her hearing. He watches her walk to the exam room and he talks with her. He figures that’s good enough. It’s something, but it’s not good enough.

If internists and family physicians are to provide the bulk of primary care to older patients, especially to those over 80 or with multiple chronic conditions, they need to think and act more like geriatricians. They have to be as interested in and knowledgeable about geriatric syndromes (falling, incontinence, dementia) as they are about standard internal medicine diseases (high blood pressure, diabetes, pneumonia). They have to incorporate the major elements of comprehensive geriatric assessment into their daily practice—things like mental status exams and advance care planning. They have to accept that lots of “minor” conditions such as osteoarthritis and eczema have as much or more of an effect on quality of life as “major” organ dysfunction such as heart failure or chronic obstructive pulmonary disease.

We can’t as a society rely on geriatric specialists to provide this kind of care—we just aren’t training enough of them and we’re unlikely to do much better in the near term. We have to use internists and family physicians. That means we need to do a better job in medical school and residency teaching them basic geriatric principles. Or perhaps we need to systematically assure that they work together with geriatric nurse practitioners and other advanced practice clinicians to compensate for their deficiencies.

Making Dollars and Sense with MediCaring

For roughly 20 years, a proposal to offer a new Medicare benefit for frail older people has gradually been building momentum. Named Medicaring, it's the brainchild of the pioneering geriatrician and palliative care physician, Dr. Joanne Lynn. Now, the Altarum Institute, where Dr. Lynn is the director of the Center for Elder Care and Advanced Illness, has launched "MediCaring Communities." Lynn and colleagues describe this new, revised model and offer a simulation to show how it could play out in practice in an article in the Milbank Quarterly. The bottom line is that the concept not only makes sense, but it also makes dollars and cents.

The basic premise is that we still do a poor job of caring for frail elders, exactly what I repeatedly argue in my blog posts: we prescribe the wrong medications, subject frail elders to too many tests, and provide treatment that makes sense for people with just one medical condition, not for people who are very old, have multiple chronic conditions, and suffer from impairments in their daily activities. As a result, frail elders are often hospitalized, where they develop delirium and falls and endure incontinence and iatrogenesis. If this state of affairs wasn’t bad enough, all this costs a fortune.

In response, the proponents of MediCaring Communities argue that we should instead address frailty by providing “reliable, supportive services and a care plan that reflects the frail person’s situation and priorities.” This is best achieved by integrating supportive services (transportation, social services, and housing) and medical care and by replacing some of the most expensive and burdensome medical services with additional support services. Those who would be eligible for this program would either be over 65 and have at least 2 areas of physical limitation (or dementia) or over 80, regardless of limitations. In addition to incorporating health, social, and supportive services, a community board would monitor and revise the program. And each participant in MediCaring would have a longitudinal care plan that reflects his or her personal goals of care.

The authors simulated how this program would unfold in 4 different communities, reflecting diverse environments: Akron, Ohio, Milwaukie, Oregon, Queens, New York, and Williamsburg, Virginia. Working with leaders in each area, 4 separate plans were developed that varied in the details of their operation but were similar in the overall strategy. What they found was that all 4 communities would generate substantial savings every month for each enrolled beneficiary. These savings would arise from reductions in inpatient hospitalization, decreased use of skilled nursing facilities, and lower use of long term nursing home care. In Queens, for example, the monthly savings per enrollee would total $250 in the first year, but rise to $537 by the third year. Cumulative net savings from the 4 communities was projected to be about $11 million by the end of the second year and $31 million by the end of the third year for the 15,500 eligible patients.

For MediCaring to work in practice, CMS would need to grant waivers to bypass various regulations that govern current Medicare provider organizations. But most important—and most challenging—it would require older people to be identified as frail (an estimated 10 percent of the population over age 65 is frail, with that percentage rising with age) and it would require that frail patients and their families accept the tradeoffs that underlie MediCaring. Is that a realistic possibility in this era where people don’t want to think about declining health and don’t want to limit their options?

The good news is that 42 percent of Medicare beneficiaries are enrolled in hospice at the time of their deaths--and hospice, like the proposed MediCaring program, demands tradeoffs. It's taken 30 years to reach the current level of participation: in 1987, 4 years after the hospice benefit was first introduced, only 7 percent of older patients were enrolled in hospice at the time of their death. But still today, many people only enter hospice in the very last days of life, too late to derive maximal benefit. Nonetheless, Americans gradually came to understand that their needs changed as they entered life's last phase and that hospice provides more of what they need and less of what they don't than conventional Medicare. We need to help older people and their families reach the same conclusions about MediCaring.