Vol. 2 Issue 20
Unique Sutter VNA program offers a bridge between home care and hospice
Rosemary Gerber, BSN, RN, knows not every home care patient is going to recover. For some, the progression of disease or disability marks the beginning of the end of their lives. These are the patients Gerber and her staff of home care and hospice nurses want to reach.
Gerber is manager of the Advanced Illness Management (AIM) program implemented in fall 2002 at Sutter VNA and Hospice. AIM currently serves patients in Alameda, San Francisco, San Mateo, Marin and Sonoma counties, filling the gap between active treatment and end-of-life care. It is also a way to enhance a patient's quality of life while addressing end-of-life issues.
"AIM is designed for people who are physically declining but are either not clinically or emotionally ready for hospice care," Gerber said. "In AIM, you don't have to decide to stop aggressive treatment as you do in hospice. The essence of AIM is to provide people with choices as they decline."
AIM is part of home care, although it encompasses characteristics of both home care and hospice. While home care focuses on recovery and rehabilitation, AIM's focus is on symptom management and providing comfort for patients who are likely in the last year of their lives. Hospice patients typically have a 6-month prognosis and have chosen to stop life-prolonging treatment. AIM patients can continue treatment, even aggressive treatment and hospitalization, at the same time they are receiving comfort care.
One of the program's goals is to manage symptoms well enough that hospitalizations and ED visits are reduced. Another is to provide information about hospice much earlier in the course of their decline. Getting patients to hospice sooner allows them to truly benefit from the services, comfort and philosophy of maximizing the quality of the last part of their lives.
As with home care, AIM patients must meet health-related requirements for admission. Patients referred to AIM must be eligible to receive home care services, Gerber explained. That means, under Medicare and most private insurances, they must be homebound with skilled nursing needs. Those requirements don't apply for hospice care.
"The first question we ask is, 'Would you be surprised if this patient passed away in 6-12 months?' If the answer is no, we move on to other criteria," she continued. "Patients should meet at least two of four criteria, including a diagnosis of advanced illness, such as cancer, advanced CHF, other end-stage disease or advanced debility and decline. In addition, non-palliative treatment may be failing, or losing effectiveness. Patients should be exhibiting a decline in function over the past month, or they could be eligible for hospice, but just not ready to make that decision."
AIM provides healthcare teams for its patients, including RNs and social workers. Like traditional home care, AIM nurses can assist their patients with ADL and skilled needs for example, dressing changes or IV infusions while offering one-on-one teaching and symptom management. In addition, these patients may continue to receive care from PT, OT, ST, RD and home health aides. They work together with patients and their families on symptom and medication management and end-of-life issues.
"I'm always amazed at what people's preconceived views of hospice are," said Tara O'Connor, RN, San Francisco AIM nurse. "Even home care nurses have a lot of questions about hospice they may not feel comfortable with hospice. Some patients may not feel comfortable with it, either, so AIM is the best answer for them."
"This kind program attracts nurses who particularly enjoy the psycho-social aspects of patient care," Gerber said. "The process of working with patients and their families who are ambivalent and in transition can be challenging. It's a different kind of nursing."
That's for sure, said Clare Borges, RN, who had been a Sutter VNA hospice nurse, then a home care nurse, before joining AIM in San Leandro.
"AIM is more challenging for me than doing straight hospice in a lot of ways," Borges said. "When someone is transferred to hospice they're at a place where they've accepted their prognosis. Many AIM patients are still seeking aggressive treatment while we see them declining at the same time. We kind of have to go where they're at with them. We do a constant dance between the doctor, patient and family.
"But at the same time, it is very rewarding," Borges continued, "because we're able to meet their needs wherever they are."
Virginia Lorencz, RN, an AIM nurse working in San Leandro, concurred. Before joining AIM, Lorencz was a Sutter VNA home care nurse for 18 years. She's also worked as a hospital nurse.
"There's a much slower pace in home care [than in the hospital]," Lorencz said. "You have to be very independent and able to do critical thinking on your feet."
Stacy Holbrook, RN, an AIM case manager in San Leandro, agreed. Holbrook has been in home care since 1991 and also precepts new home care nurses.
"Home care is very challenging," she said. "The job is very intense and we have a lot of paperwork. But for me, it's a terrific place to be. It's very flexible I can schedule my time around my kids' school programs or other important events. In hospitals, nurses don't have time to sit down and just talk with their patients. I do."
As a home care nurse, Holbrook noted she was seeing patients who were more debilitated, in more pain, dealing with many other issues a lot were ready for hospice physically, but not emotionally.
"In home care, we had to discharge them if they didn't choose hospice, and we knew they needed more care," she said. "AIM is really a bridge between the doctor and the patient."
"The transition AIM offers our patients is very natural," Lorencz added. "It's hard to ask someone to choose hospice or give up care in their home. The flexibility of AIM is ideal.
"It's so rewarding because of the deep relationships we form with our patients. I love this idea of pure nursing," she continued. "It's so seldom that nurses can do this, so this is very special."
A Time to Teach
On paper, Gerber said, the services for AIM patients are the same as those a home care patient would receive. It's a question of orientation of care, she noted.
"AIM is a transition between home care and hospice," Gerber said. Our goal is to help them cross the bridge when they're ready."
That help comes from nurses dedicated to helping patients and their families make the transition from treatment to end of life.
"We get patients [into hospice] earlier on than in other circumstances," said O'Connor, who still provides hospice care. "It makes it easier for patients to transition. I can say to my patients, if you're ready, nothing will change. I'll still be here with you."
Lorencz said the AIM focus on teaching is important for her and her patients. Transitioning to hospice is an important part of the AIM program, so part of her job is explaining what hospice can do for them.
"We ask our patients about advance directives, ask them their understanding of what is happening to them," she said. "We focus on pain management and symptom management, have the medical social worker come in and talk with them and let them be part of the decision making."
That's an important consideration, Holbrook noted.
"Home care patients AIM patients are coming home with much more complicated needs," she said. "The training we received for AIM has given me the tools to take care of my patients and teach them what they need to be able to stay home. An AIM patient's mindset is, 'I can still get better.' We support that until they change their mindset."
Gerber noted that older patients are more likely to move on to hospice as they see their time grow shorter. Younger patients may be more aggressive about treatment, and may continue treatment such as TPN and receive appropriate palliative care at the same time.
Education is not just for the patient, Gerber said. Family members and even the medical community tend to look away when the subject is death, and many don't understand the hospice concept.
"Over the past few years, the length of stay in hospice has shortened because people are afraid it's a death sentence," Gerber said. "People think, 'If I find the right technological advance or the right new med, I won't die' but that doesn't address the reality of the situation. Doctors are reluctant to mention hospice; family members are unable to let go and the patients may end their lives with high-tech intervention in the ICU, even if they'd previously stated they wanted to die at home."
That's where the AIM nurse comes in. While they're talking about symptom management with patients, Gerber said nurses can ask simple questions. "So, how do you think things are going with your illness?" is often enough to prime the pump and get patients thinking about their situation. Some 50 percent more AIM patients transition to hospice than those in home care alone, she pointed out, but only about 40 percent of AIM patients move to hospice.
"We end up discharging many of our patients back to the community, because their skilled need has been met," she said. "Hopefully, they are better equipped to deal with their symptoms and have addressed some end-of-life issues, such as creating an advance directive.
"In AIM, our nurses can talk with their patients in advance about what they want to have done when crises arise," Gerber continued, referring to end-of-life care. "We bring up topics like DNRs or tube feeding, and help them to think about it. When they're ready, it becomes a way to discuss other, larger issues."
A hospital nurse for 16 years, Andie Cattern, RN, works out of AIM's San Francisco office. It's natural, she said, for patients to be frightened when they hear hospice suggested.
"Hospice can sound very final," she said. "But for AIM patients, treatment often is with the same nurse as they transition, making care continuous.
"It's a very holistic approach," she continued. "We're addressing their medical symptoms as well as their emotional and spiritual needs. This is 80 percent about talking about where they are, where they want to be. Our work is symptom management pain, dyspnea, nausea then we introduce end-of-life care when the opening in the conversation permits."
The conversation usually includes family members, Cattern said.
"AIM also offers support and partnership to the patient's caregivers," she said. "Some families do a beautiful job caretaking, so that even if they don't choose hospice, they've gotten the tools they need during their time in AIM to take care of things. But it's not all doom and gloom we laugh a lot."
"It's really a privilege to be part of the AIM program," she said. "You're going into someone's home. If you don't have a heart for it, if you don't connect, it won't work.
"But when you do, it's perfect."
Candy Goulette is regional editor at ADVANCE.