Home care for heart failure poses unique challenges

Janet Dunn, a nurse-practitioner who specializes in heart failure and palliative care, raised the issue of hospice for more than a month with James Berry, one of her patients.

Berry, a retired data-center manager, would have none of it. He hoped God would fix his failing heart.

"God gave me the knowledge and sent me to take care of you," said Dunn, who knew there was no cure for heart failure. That didn't work.

Then, in mid-December, Berry, a 77-year-old stroke and heart attack survivor, had a bad weekend. He was ready for the talk.

Dunn sat with him in his Germantown home, which just happens to be two blocks from the house where she grew up.

She told him she wanted to pick up their earlier conversation about "goals of care."

Berry, playful as his more somber wife and niece watched quietly, raised his hand, smiled, and said, "I'm heaven-bound."

Dunn didn't miss a beat. "My role is to keep your trip to heaven as comfortable as possible."

Last week, Berry died at home surrounded by his family and members of his church. Dunn had seen him just a few days before.

Dunn works for an unusual home-care program from Abington-Jefferson Health. Teams of specialized nurses work only with patients with heart failure, a complex condition that is ultimately fatal but that can be managed with medications, dietary changes, and, sometimes, mechanical assistance. Abington's program, which typically has about 100 people in its caseload, covers the full range of care, from newly diagnosed patients who need to learn how to manage their illness to palliative and hospice care. The nurses can care for people taking intravenous medications that once could be given only in hospitals, and for those with left ventricular assist devices (LVADs).

In recent years, heart failure has gotten a lot of attention because many patients are frequent fliers who bounce in and out of the hospital. Insurers have started penalizing hospitals that have high readmission rates. Hospitals and some home-care programs have responded with a variety of approaches that monitor heart-failure patients closely so problems can be addressed while they're small and can still be fixed at home.

"Our goal is always to keep heart-failure patients out of the hospital," said Suzanne Hoy, who recently switched from managing the heart-failure home-care program to becoming nurse manager of the hospital's heart-failure unit.

What makes Abington's home heart-failure team unusual, Dunn said, is the attempt to help patients seamlessly navigate from fighting the condition to making the best of it when the battle is lost. Keeping patients like Berry comfortable is not only what's best for the health-care system, she said. It's what's best for him.

The team is expanding now, she said, because the number of people with heart failure is increasing "by leaps and bounds." Currently, an estimated 5.1 million Americans have heart failure, which results from a weakened heart muscle. Doctors have gotten much better at saving people who have heart attacks, but many of the survivors have heart failure, Dunn said. Uncontrolled blood pressure is another major risk factor.

A blood infection is what caused heart failure for Sol Pollan, a tall, 88-year-old retired weight-lifter and microbiologist who lives in Warminster. He was on the upswing when nurse Stephanie Pearn visited him last month. She wasn't pleased to learn he had decided on his own to stop his medications after a bout of dizziness, but she sympathized after she checked the blood pressure records he had been keeping. The numbers had gotten too low. He had lost weight and greatly improved his diet, and his heart was getting stronger. She urged him to drink a little more - fluids are often tightly controlled in heart-failure patients - and said she would talk to his cardiologist about the medications.

Pollan was close to discharge, but Pearn wanted to keep him on because of the dizziness.

He complained about how hard it usually was to reach a doctor when you had a problem. The home-care program made it much easier to talk to someone, he said. "I think it's an amazing program, really helpful."

Though Berry was younger than Pollan, his heart failure was more advanced. His was at the worst stage, with symptoms at rest that restricted him.

Dunn said it was often hard for heart-failure patients to accept that they are dying, even harder than it was for many cancer patients. It is the nature of heart failure for patients to have periods of weakness followed by periods of stability. Doctors can save them even when they're very sick. "They feel like they have nine lives," Dunn said.

She often has to point out that hospitalizations are getting more frequent and longer.

"Anyone with two or more hospitalizations [in a year], we start having goals-of-care conversations," she said. Some people are OK with living in a wheelchair in a nursing home or being on a ventilator. Berry had rejected the idea of an LVAD. He was annoyed by the constant drip of the drug that whips the heart into beating harder, and had symptoms despite the medication.

About a month before his death, Berry and Dunn talked about stopping the drug. She asked what he wanted to do about his defibrillator, which would shock him - causing pain - if his heartbeat became too erratic. What usually follows that is a trip to the hospital and the kind of rescue care he said he didn't want.

"I don't know," he said. "What do you recommend?"

"I generally recommend that you deactivate," she said, "so you don't feel that pain."

Dunn told the family they would have access to extra supplies, oxygen, and special medicines. Nurses would continue monitoring for fluid buildup because keeping it low would help him feel better. The program doctor would visit him.

That would be fine, Berry joked, but he didn't want any visits during his football games.

Dunn left that day, confident that Berry and his family were on the right track.

sburling@phillynews.com

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@StaceyABurling