In the recent documentary, Extremis, filmed in an ICU, a physician caring for extremely ill patients with no hope of recovery helps families understand their options and decide whether to unplug the machines keeping patients alive. It’s wrenching to watch; all the more so because the patients have not communicated their wishes to their families, though one who is semiconscious repeatedly tries to pull out her breathing tube and another attempts, unsuccessfully, to scrawl a note.
Over the past decades, health care professionals — often led by specialists in palliative care — have promoted advance care planning and urged patients to consider it earlier in the course of serious illness. This gives patients, family members, and providers time to overcome their reticence and talk through options when curative treatments no longer work.
This is inherently challenging because the path between a terminal diagnosis and the decision to forgo curative treatment is rarely a straight line. Patients with serious illnesses are often caught in flux. They may have good and bad days, or months, and their needs and goals change accordingly. They also may be struggling to make sense of new symptoms, their disease progression, and their prognosis, or harboring false hope, all of which make it more difficult to reach decisions.
The result can be a startling disconnect between what happens at the end of life and what most people say they want — to stay home with their loved ones and avoid stress and discomfort, rather than extend life as long as possible.1 Instead, as people edge closer to death, they are often subject to a crescendo of medical interventions — surgeries, fourth-round chemotherapies, respirators, and feeding tubes — often with little benefit and much suffering. Seriously ill people who do make use of hospice services often enroll just days before their death.2
“It’s what happens when you don’t focus on the transition from curative care to terminal illness,” says Brad Stuart, M.D., a hospice medical director who helped develop a new approach to managing advanced illness at Sutter Health, a large nonprofit integrated delivery system in Northern California.Known as Advanced Illness Management (AIM), the program relies on nurses and social workers to help patients with terminal conditions and limited prognoses (i.e., those in the last 12 to 18 months of life) navigate their physical and emotional challenges. Stuart and others describe advanced illness management as a “transitional service” for people as they move from intensive curative treatments to end-of-life care. Describing it this way also helps enlist the support of clinicians, who may be wary of referring their patients to palliative and hospice care, which many see as “death care.”
AIM staff coordinate often complex treatment regimens and educate patients and families on recognizing signs of decline and asking for help to avoid complications. The program also places a heavy emphasis on advance care planning to ensure patients’ goals and treatment preferences are elicited as their conditions evolve, which may mean more or less intensive care at the end of life.
Sutter’s experience with AIM demonstrates the financial benefit of proactively managing care for seriously ill patients and honoring their wishes. After accounting for the expense of the program — between $2,400 to $2,500 per patient per year — it has produced savings to payers of between $8,000 and $9,000 per person annually, principally from reduced hospitalizations and emergency department care during the final months, and particularly the final month, of life.
This case study focuses on the development and effects of AIM at Sutter, which has more than 5,000 affiliated physicians and 24 hospitals across Northern California. The health system is working to spread its approach to advanced illness care across the organization by training staff in primary care, specialty care, and emergency department and hospital settings to identify and refer patients to the program.
Programs like AIM are preparing for the so-called “gray tsunami:” by 2060, one-quarter of Americans will be 65 or older, up from 15 percent in 2015.3 Given this demographic trend, many more providers — not just those in the palliative care and hospice fields — will need to become proficient in managing advanced illness and comfortable talking about end-of-life options.
THE AIM PROGRAM AT SUTTER HEALTH
AIM currently serves some 2,700 patients a day. Common conditions include heart failure, cancer, chronic obstructive pulmonary disease, end-stage renal disease, and end-stage neural disease. Patients can be referred by providers at Sutter’s hospitals; about half enter the program that way. The rest are referred by primary or specialty care physicians or home health and hospice providers. They can be any age and have any type of insurance coverage as long as they are patients of a Sutter-affiliated clinician. When referring, physicians attest that their patients have an irreversible disease and they “would not be surprised if they died in the next 12 months” — language that AIM leaders say is vague enough to accommodate uncertainty but clear enough to identify appropriate patients.4 To be eligible, patients must also meet at least one of the following criteria:
- be deemed hospice appropriate, but not ready to enter hospice (about 30 percent of AIM patients fit this category; for them AIM may serve as a bridge)
- have experienced rapid or significant functional decline
- have experienced nutritional decline, and/or
- have had two or more hospitalizations or emergency department visits in the previous three months.