By Matt Perry
Imagine you are old and dying, told by doctors you have less than a year to live.
As you face one health crisis after another, you crave to be held in the loving embrace of a warm health-care system. Instead, you face a confusing maze of revolving physicians, recurring hospitalizations, and rising frustration.
End-of-life care is a travesty for many patients – not to mention health providers and insurers. Roughly one of every four Medicare dollars – a whopping $125 billion annually – is spent on those 5% of Medicare patients in their final year.
To combat this maddening and expensive problem, northern California’s Sutter Health has developed an Advanced Illness Management program (AIM) to make the last 6-18 months of life more personal, caring, and economical.
Introduced in 2009, the AIM pilot program was a drastic departure for Sutter.
“Patients are (now) putting words to their desires around ‘I want to stay home and I want this needless cycle of hitting the emergency department at two in the morning to stop,’” says Betsy Gornet, program head for AIM.
AIM keeps patients at home, with frequent visits from professionals who monitor health and medications, then coach the sick to self-monitor their own illnesses. The goal: keep patients far from expensive emergency departments and ICU’s.
Cancer patient Tracy Chimenti praises the many nurses who have visited him at his Sacramento area home.
“Not only do they work as a nurse, but they’re an advocate for you,” says Chimenti, 54, citing help on many fronts: positive attitude, treatment alternatives, and navigating the complex healthcare system.
The program, administered by Sutter Care at Home, begins at the hospital.
Before being discharged, an AIM care liaison asks the patient their healthcare goals.
Some patients want few or no signs of treatment in their home – no hospital beds, IV’s, or monitors. Other odious interventions, often refused, are the use of ventilators and feeding tubes.
At home, patients are visited within 48 hours by an AIM care coordinator. The nexus of this at-home team are a nurse and social worker, who visit 4-8 times a month.
Once patients are stabilized, they’re transitioned to “telehealth.” Phone calls by the AIM nurse are made weekly, eventually slowing to every other week.
Former college physics professor George Allen, 96, was in hospice before health improvements jettisoned him to the AIM program six months ago. Allen, who suffers from a variety of maladies including congestive heart failure, offers mixed reviews.
“I thought it was a very good program,” says Allen, with particular kudos for nurses and social workers, who he says have treated him with genuine concern and compassion. “They talked to me about my condition more than the doctors ever did.”
Yet Allen feels the transition from home visits to telephone support is too abrupt.
“They stop way too soon.”
AIM patients typically fall into three categories: those who aggressively battle the disease; others who accept their diagnosis to check off items on their bucket list; and those who surrender while seeking a peaceful resolution to their life – the most frequent choice.
“Their goal might be to stay home with their spouse and be lovingly cared for,” says Sharyl Kooyer, who oversees care coordination in two of Sutter’s five AIM regions.
Overwhelmingly, AIM targets older adults. Of the nearly 5,000 patients treated, more than half are 75 and older. Only one in five are under 65.
Gornet says the largest challenge has been with physicians.
“The biggest problem was helping the clinicians shift their paradigm,” says Gornet. Instead of a “one and done” system – a conversation, a medical procedure – the advanced illnesses and complexities of these patients require more sustained focus. “It’s more of a continuous care model.”
Dr. James McGregor, medical director for two AIM teams, says most physicians have only a small percentage of their patient load in the program, so may need to be educated in this continuous care model.
Some specialists, he adds, may not want to be the primary point of contact if too time-consuming.
Meanwhile, patients need similar education. McGregor says a cancer patient might reject current chemotherapy treatment based on the experiences of a family member 15 years ago — treatment that has since improved significantly.
Sutter claims great success with the program, with a 50% overall reduction in hospital admissions, 75% fewer ICU days, and 16% decrease in emergency department visits. Savings to payers like Medicare are between $3,400-$5,00 per patient every 3-month period.
Yet by slashing expensive emergency visits and ICU days, isn’t Sutter Health losing money?
“The questions have been raised a lot of times,” admits Gornet. “This is really the right thing to do. It’s the type of care coordination and support of (patient) goals we need to know how to do better and better.”
After Sutter’s initial pilot, in 2012 AIM received a three-year, $13 million grant from the innovation arm of the national Centers for Medicare and Medicaid Services. Sutter has also budgeted its own $21.6 million for the period.
Gornet says Sutter will continue to look at improvements in the program, then work with insurers and philanthropies to make AIM more fiscally sustainable.
“This is the priority for us over the next 12-18 months.”
Kooyer says the program provides welcome clarity. After receiving her end-of-life prognosis, one patient fulfilled a lifelong dream to swim with dolphins.
“When people know the truth about their diagnosis and illness, their decisions are much different than when they think they will live for another five to ten years,” she says.
Chimenti, who continues to fight his cancer diagnosis, recently placed a 4 a.m. call for help with a colostomy device and received a prompt pre-dawn nurse’s visit.
‘Those are firefighter hours,” chirps Chimenti, who himself worked as a firefighter for 32 years. “That’s pretty awesome.”
Gornet says the many successes within AIM have been heartening – for patients, nurses, doctors and administrators.
“You start to see the profound differences you’re making in their life,” she says.