Home care a win-win prescription
Tara Sweeney (right), a nurse in the Hospital of the University of Pennsylvania's palliative-care program, talks with her patient, Leslie Glick. Many patients are thinking about the future and want to talk about it before there's a crisis, Sweeney says. TOM GRALISH / Staff Photographer
Leslie Glick and the leaders of an experimental home-nursing program at the University of Pennsylvania agree about this: She should stay out of the hospital if she can.
Glick, whose lung cancer has spread to her bones, liver, and brain, put the program to the test on a recent Saturday. She felt awful. She was vomiting, and suffering from severe stomach pain.
Her daughter and a neighbor sat with her. Ordinarily, Glick said, they almost certainly would have called an ambulance, but the Penn program, CLAIM, gave them another option - a 24-hour nursing line. They called it instead, and, within hours, a nurse arrived at her condo near Rittenhouse Square.
The nurse discovered Glick's blood pressure was sky high, and he thought serious acid reflux was causing her stomach symptoms. She doesn't know what he gave her, but she was soon asleep - in her own bed - and felt much better the next day.
The Penn program is part of a national trend, exposing patients who are not dying but who are gravely ill to palliative-care programs far earlier than usual. Palliative care focuses on alleviating pain, symptoms, and stress.
Diane Meier, an expert in geriatrics and palliative medicine at Mount Sinai Medical Center, said home health agencies were experimenting with palliative medicine to help patients avoid repeated trips to emergency departments. She called Penn's program "among the best developed." If it is successful, "Medicare may decide to make such care available nationwide."
David Casarett, a doctor who directs Penn's hospice and palliative-care program, got a three-year, $4.3 million grant from the Center for Medicare and Medicaid Innovation to test CLAIM, which stands for Comprehensive Longitudinal Advanced Illness Management.
It allows patients like Glick who want to fight their cancer to benefit from the team approach. Glick, who says she "might go down fighting," can be in CLAIM while getting chemotherapy.
By contrast, hospice patients must forgo aggressive care.
"The overarching goal of the program is to provide hospice-like services to patients who are not yet ready for hospice," Casarett said. A third of patients enter hospice in the last week of life, too late to reap many of its benefits.
"There's a huge need to bring some hospice services upstream," he said. "What we do really should be a part of regular care, but it's not."
The program is meant to fill some gaps that plague cancer care.
Oncologists often are most interested in killing cancer cells. They may not be as well-trained in managing symptoms or treatments that can greatly impair quality of life, Casarett said. When patients have pain their caregivers can't manage, especially after normal business hours, they often have little choice but to go to an emergency room. Next, they're getting lots of tests and being admitted.
Those admissions are often avoidable, Casarett said, and are a key transition where the system could save money.
CLAIM, which began taking patients in November 2012, has served 591 people. It has cut hospitalizations by 50 percent, for a net saving of $442,000, he said. That was in spite of higher staffing costs: extra nursing visits and the involvement of a nurse practitioner, social worker, chaplain, and home health aide.
CLAIM staff have discussed care preferences with 80 percent of patients and gotten pain to a comfortable level within 48 hours for 85 percent. Historically, only about 30 percent of patients discuss goals, and half have adequate pain control, Casarett said.
Palliative care has been gaining traction as a way to give extra support to patients with hard-to-manage symptoms. Eighty percent of hospitals with 50 or more beds now have palliative-care programs, more than three times as many as in 2000, according to the Center to Advance Palliative Care. Originally a service for inpatients, palliative care has been moving into ERs and primary-care clinics, too. Meanwhile, Casarett estimates that 10 percent to 20 percent of hospices have begun offering home-based palliative care.
Nurses who have worked in hospice need to think differently when they work in CLAIM, Casarett said. A hospice patient with a fever may get just Tylenol. The team might respond much more aggressively to a feverish CLAIM patient.
Meghan Coleman, a nurse practitioner, came to CLAIM from an oncology office, where she said it was hard to manage patient symptoms by phone. She also thought many patients were getting too much care.
Now, she can talk to patients about their expectations while they're comfortable at home and "have their cat in their lap." They talk about the future before there's a crisis.
She always asks permission. "We're not there yet, but can we talk about this?" she asks.
Often, patients welcome the discussion.
"It's not something that the patient isn't already thinking about," said Tara Sweeney, Glick's primary nurse.
Casarett said those conversations often have a major effect. Sometimes, patients have been thinking for weeks about stopping therapy, but they don't want to disappoint the oncologist who's cared for them for years. The doctor may be worried that a patient won't be able to handle another round of chemo but fears the patient will be let down if care stops.
"A lot of patients are getting treatment that's more aggressive than what they want," Casarett said. He did a survey a few years ago that found 10 percent of outpatient oncology patients didn't want more chemo, "which isn't at all surprising, except that we were doing these interviews in the chemotherapy suite."
Glick appreciates the team approach to her care and the extra support when she's in trouble.
"I know I'm being taken care of, and it's great to know that," said Glick, 70, whose gray hair beneath her wig is short and fuzzy from chemo. She has lost 60 pounds and has two walkers, but this former advertising media director is resilient enough to delight in the needlepoint pillow a friend gave her. "F- cancer," it says.
She still hopes to see two young grandchildren graduate from high school and is far from ready to accept hospice.
"I feel very strongly about living," Glick said, adding that she may not live long. It would take a very severe decline in quality of life to change her mind about care, she said.
Still, she took her daughter along to a funeral home to discuss cremation. And she was happy to talk recently with Coleman about where she's heading.
"I don't want anything hidden," Glick said. "I might be very, very, very depressed, but I would prefer to have it aboveboard and in the open."
Cancer patients who want to join CLAIM can call 610-617-2400. They must be patients in the Penn health system and eligible for home care.
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