Leaders at three hospice and palliative care centers wanted to better serve cardiac patients, either by engaging them earlier in hospice or by offering the kinds of pain and symptom management for which hospice is known. Hope Hospice (FL), the Palliative CareCenter of the North Shore (IL), and Kaiser Permanente Bellflower (CA) have encountered different issues and challenges as they embarked on innovative programs to reach cardiac patients and their families. However, each relies on careful treatment planning with patients, physicians, and families; daily contact with patients; and periodic nurse visits to the home.
Della Leavitt, R.N., is Case Manager for CHF patients at Kaiser Bellflower. "The idea of our program is to give patients back control and quality of life-and that is extremely important," says Leavitt. "The whole point of our program is to improve the quality of life for patients and significant others."
Three years ago, CHF was the third highest cause of hospital admission for Kaiser Bellflower. Leavitt credits Lee Dykstra, M.D., for suggesting that many CHF patients could manage their own symptoms at home, given appropriate support and resources. In the 3 years since then, 360 patients have enrolled in the program. Of the 120 who have died, about 80% have died at home and about 30% have been hospice patients.
Like Kaiser Bellflower, Hope Hospice in Florida wanted to enroll more cardiac patients sooner. "We care for lots of cancer patients and wanted to help others, such as people with heart disease. We wanted to increase access to hospice care," says Samira Beckwith, President and CEO of Hope Hospice. This desire is based on data indicating that a very small proportion of cardiac patients used hospice at all, and then for a very short time. In a recent year, more than one-third ( 35%) of cardiac hospice patients died within 2 weeks of referral.
Dorothy Pitner, President of the Palliative Care Center of the North Shore, wanted to bridge the gap between traditional home care and hospice services, "to bring in people with end of life issues who would benefit from palliative care. To us, that's care that can follow a person from birth to death-it's good medicine, good clinical management, not just pain care. It's pain and symptom management along with emotional and spiritual aspects of care for the patient."
Programs. Each group approaches its work differently. At Bellflower, Leavitt works closely with patients and caregivers, initially in person and then by phone, teaching them to recognize and control CHF symptoms. Staff at the Palliative CareCenter rely on the telephone as a lifeline, helping patients make the transition from daily nursing visits to daily phone calls, and empowering patients by urging them to keep a daily journal of symptoms and medications. Hope Hospice also gives patients at-home emergency kits, with the medications they once traveled to the ER to receive.
"Patients weigh themselves daily and call in with results. They talk about how they feel. I work by phone to keep them out of the ER," says Leavitt. "I look at the person as a whole, not just as a heart."
Some 200 of the 220 people now in Leavitt's program are stable. After an initial orientation session, patients report their weight and other symptoms to Leavitt daily, for 2 weeks, by phone. Each patient receives an information package with detailed instructions about the particular patient's treatment planning and daily routines, as well as relevant reading materials.
All patients attend monthly group case management team meetings, which offer an education forum, an opportunity to talk to others, and a chance to hear from Dr. Dykstra or other Kaiser physicians. Leavitt writes and mails patients a monthly newsletter.
The phone is a lifeline for the Palliative CareCenter of the North Shore, where Pitner's team is working to "move up the curve between the home health operation and hospice, and to use the principles of palliative care as an undergirding for both. We wanted to work with people who have chronic, age-related infirmities, people who have aging issues. An 80-year old with a broken hip, for example, how do you support her? What's appropriate for her?"
The CareCenter initially identified several high-risk patients for its pilot study, conducted as part of the Institute for Healthcare Improvement (IHI) Collaborative on End of Life Care. The Center identified four patients whose health had been severely compromised, but who were not eligible for home health services.
"We've stabilized their symptoms. By getting involved, we can stabilize them, then support them where they are, by working with their physicians and with them," says Pitner.
At first, the patients-two 73-year olds, and two octogenarians-required several daily in-home nursing visits. These have gradually given way to daily phone calls to patients and caregivers.
"One patient is an 87-year old who lives with a hired caregiver. In eight weeks, we've made 38 phone calls, working with the caregiver to emphasize the importance of giving medications. The patient has had no exacerbation of her illnesses," says Pitner.
In Florida, Hope Hospice has worked with cardiologists to develop protocols for the cardiac patients involved in its IHI project. It has instituted comfort measures in the home, creating comfort care kits that contain nebulized morphine, Lasix, and other medications usually found in the ER.
"We know that these people can't be cured. But we also know there's never a point to say there's nothing we can do: There's always something we can do. CHF patients often feel alone and afraid. They need people to sit with them and help plan for their treatment-and that's what we're learning how to do," says Beckwith.
Each hospice has developed its own way to measure success for the project. At the CareCenter, Pitner has quantified the costs for patients in her program compared to what treatment-as-usual might have looked like. A 3-day hospitalization, for one patient for example, cost about the same as 3 months of home care.
Hope Hospice decreased nursing visits from a total of 25 visits to 9 patients before the project was in place to 19 visits after it got started; PCS visits went from 6 to 2-while chaplain visits went from 4 to 6.
Leavitt notes that, in the course of working with patients, she has uncovered previously undiagnosed problems, including cancer and diabetes. Some patients, including a 17-year old boy, have since had heart transplants.
But the most telling stories, perhaps, are told by families. Leavitt reports one man who, granted more understanding and control of his condition, returned to his great joy, deep sea fishing. She also describes the experience of an elderly couple in her program. After her husband's death, a widow continues to visit Leavitt each month, thanking the staff and touching base about her own health, which Leavitt monitors.Barriers. Along the way, each group has hurdled different obstacles. Hope's Beckwith found that cardiologists and other healthcare professionals tended not to know how hospice could help their patients-or did not know how to refer patients. She and her staff are now working with the leaders of each cardiology group in Ft. Myers to talk about how they can work together to meet the needs of patients and families.
"We hope to model for others how to model care for each illness," Beckwith says. "We see this as an ongoing process and plan to put more energy into working with cardiologists while expanding our outreach to other specialists and their patients."
Leavitt found that many other hospices in the Kaiser system are simply unwilling to take patients for whom there is no "guarantee" of Dykstra to work with other doctors, to set an example here so that they can see what works.
We want to make sure we transfer people easily from a quality of care to a quality of end-of-life care, and hope that others will follow our model."
And Pitner is looking forward to results from a control group of patients who were unwilling to enroll in the pilot project. "They didn't want to be involved with palliative care or hospice, but agreed to let us come back in 9 months to do some measurement surveys. We had to work hard to find a control group-they aren't likely to be as sick as the people in our pilot, for example."
Her group has found doctors receptive."When I visit these doctors, they are so overloaded with paperwork and patients, that our project adds value to the physician process. It is very patient-centered and has been well-received."
Each group is continuing to revise and improve. As Leavitt says, "Any time you reach a goal-or haven't-you can change and readjust. My program is very dynamic. I'm always changing, moving, or adding something to it."
For information on each of these projects, the experienced experts quoted in this story are willing to try to be of help. Their phone numbers and e-mail addresses are listed here:
Samira Beckwith: 941-482-3380 or samibeck@aol.com
Della Leavitt: 562-461-6763 or dleavit@ibm.net