Giving Seriously Ill Patients More Choices About Their Care

Nearly everyone in health care wants to cut waste and reduce unnecessary costs — until the conversation turns to advanced chronic illness and end-of-life care. Fears about “pulling the plug on granny,” no matter how ill she may be, have slowed progress toward value-based care. As Atul Gawande notes in Being Mortal, “Such talk, however carefully framed, raises the specter of a society readying itself to sacrifice its sick and aged.”

A new clinical model based on an advanced illness-management program one of us (Brad) developed at Sutter Health, an integrated system in Northern California, demonstrates how to increase quality while dramatically reducing costs. The solution: Help seriously ill people choose exactly what kind of care they want — and want to avoid. This model doesn’t leave patient choice to chance; it’s hardwired into clinical operations.

The Status Quo

One-quarter of all Medicare dollars are spent on treatment during the final year of life, with one-third of the final-year expenditures squeezed into the last month before death. Over that period, 80% of spending is for hospital-based treatment, much of it in intensive care units (ICUs). America’s medical model has mastered trauma, infections, and other curable conditions — but it fails when it’s applied to advanced chronic illnesses.

Such illnesses progress on their own schedule, and full recovery is rare. Indeed, some types of “usual care” — such as chemotherapy for late-stage cancer and multiple hospitalizations for advanced heart failure — appear to shorten life, not prolong it, compared with palliative care focused on comfort. In effect, the notion of a “cure” for advanced chronic illness is an oxymoron. Nevertheless, when patients with such illnesses deteriorate, our default response is aggressive, hospital-based treatment, even though most of those patients say they would prefer to stay as safe and comfortable as possible at home — if they were given the choice.

Hospice, which Medicare pays for, was designed as a home-based alternative to hospital care for maintaining quality of life at the end of life. But to qualify for hospice, patients must have a life expectancy of no more than six months, and, unless they participate in the current Medicare Care Choices demonstration, must forgo their right to curative treatment. Consequently, many people, their families, and their physicians resist hospice until all therapeutic options are exhausted. Over one-quarter of all hospice patients get enrolled when they have less than three days left to live, many of them coming straight from the ICU. For these people, hospice is just another emergency service tacked onto the end of a long siege of hospital treatment.

A Better Model

Physicians are expected to conduct advance care planning with their patients who have chronic illness. But because many doctors dread these talks, they often don’t occur. And even if they do, the resulting advance directives may be inadequate, even inaccessible, in a health crisis.

Sutter and other health systems have risen to the challenge, combining best practices from hospice and palliative care to create an advanced care model that extends the practices of primary- and specialty-care physicians into the patient’s home through interdisciplinary teams of palliative-care providers, care managers (nurses and social workers), community health staff, spiritual care providers, and others. The goal: Help patients clarify and document their care preferences, communicate those preferences to providers, and then oversee their preferred mix of medical and nonmedical care, ensuring they receive no more and no less than they want. By having patient choice directly inform a shared care plan, the advanced care model can break the common cycle of late-life revolving-door hospitalizations, thereby enhancing quality and lowering costs for consumers and health systems.

Sutter’s Advanced Illness Management (AIM) program, funded by a $13 million grant from the Center for Medicare & Medicaid Innovation (CMMI), achieved the most significant quality improvement and utilization or cost reduction in CMMI’s entire Complex/High-Risk Patient Targeting portfolio. On average, AIM saved $5,700 per patient in the final month of life, and almost twice that during the entire enrollment period. To date, the program has served more than 16,000 patients.

Similar programs implemented after Sutter’s by others — including Sharp HealthCare in San Diego and Aetna — have also produced good results. Sharp reported that its Transitions Advanced Illness Management Program reduced mean per-participant costs in the final month of life to $3,711, compared with $17,006 in a control group that received usual care. Both Sutter’s and Sharp’s programs had high rates of satisfaction from patients, families, and referring doctors. Indeed, three-quarters of physicians surveyed about AIM agreed that “the program decreased my workload.”

Based on the experiences of one of us (Brad) with AIM and other programs and an ongoing research program that one of us (Len) is conducting on improving the service experience of patients with advanced illness, we believe that advanced care models should have eight key components:

• They establish close, enduring personal relationships, primarily in the home, among patients, family, and staff.
• They ensure seamless communication across all clinical settings to remedy fragmented, episodic standard care.
• They relieve pain and suffering, which, if left untreated, impair quality of life and encourage hospitalization.
• They educate patients and their families about disease process and prognosis, and they foster open discussion about all options for care, including hospice.
• They engage patients on their own terms and at their own pace to identify what matters most to them.
• They document personal care preferences as they emerge, and they use electronic health records or traditional communication channels to convey those preferences to all potential providers.
• They continue these discussions, documenting and transmitting any new care preferences that may emerge as disease progresses.
• They provide support to families to help relieve the burden of caregiving.

Carefully recruited, well-trained team members are critical to effectively implementing these eight features. They’re taught to talk frankly and with ease about sensitive issues, such as treatment failure and impending death. According to a care manager quoted in CMMI’s report, “Having a conversation about end-of-life options allows everyone to breathe.” They’re also expected to help patients navigate the complex world of clinical medicine.

One blind patient said, “The nurse case manager went with me and stayed through it all. A lot of people who go to appointments with me drop me off and leave. When you’re blind, you get kind of scared. She stayed with me, and the doctors explained everything to her. That’s what I need.”

The staff, in turn, feel fulfilled. In program evaluation interviews, care managers often say, “This is the work I was meant to do.”

Moving Forward

Imagine having a health care system as committed to improving end-of-life care as it is to treating illnesses. The advanced care model offers an innovative solution that benefits all stakeholders — patients, families, providers, and payers — by informing and engaging seriously ill patients directly in making decisions about their care. Cost savings result from avoiding treatments that patients don’t want, not from rationing care.

A proposal for a national demonstration of the advanced care model is now before the Physician-Focused Payment Model Technical Advisory Committee (PTAC) created by the Medicare Access and CHIP Reauthorization Act of 2015. PTAC will decide whether to recommend implementation to the secretary of the U.S. Department of Health and Human Services. A multipronged approach to financing that involves both care-management fees and shared savings would support replication, scaling, and sustainability. The advanced care model could be an important element in migrating the U.S. health care system from a supply-driven, fee-for-service structure toward payment for real value. It would hardwire choice, compassion, and communication into the care of our sickest, most vulnerable citizens.