This is the first in a series of stories profiling a Napa woman, Margaret Keane, and her experience with hospice care.
Last October Napan Margaret Keane, the artist famous for her “big eyes” paintings, wasn’t doing well.
Age 90 at the time, she was suffering from congestive heart failure, had pneumonia, circulation problems and was fighting various infections.
“She was going downhill fast,” said her daughter, Jane Swigert. Her mother “was getting weaker and showing signs of dementia. Fighting those infections and pneumonia really took a toll on her.”
A year later, Keane’s health has stabilized as much as possible. Keane and her daughter Jane and husband Don Swigert credit her recovery in large part to care she’s received from hospice services from Napa’s Collabria Care.
“She’s improved a lot,” said Jane Swigert. “She’s gotten so much better.”
Since it was founded as Hospice of Napa Valley in 1979, Collabria Care has become a center for community-based care delivery and resources in the North Bay. It serves those facing transitions of aging, Alzheimer’s disease and other serious illness or the end of life.
When Margaret’s primary care physician, Paul Sweigert, M.D., recommended hospice care, Keane said at first she wasn’t so sure.
“I thought, oh no, that’s the end,” said Keane. “I don’t want that yet. But they explained to me, it’ll be better, you’ll get all kinds of” help, she recalled.
“Her quality of life is improved and her duration of life may actually be extended by going with hospice,” said Dr. Sweigert.
After hearing about how hospice could help her, “I thought it’d be great,” said Keane.
“Any help I could get” was greatly appreciated, said Jane Swigert.
“It’s a big deal for her to go anywhere,” said Jane. Her mother uses an oxygen tank and has limited mobility, which means it’s not easy to leave the house, especially for doctor appointments. “She would be so out of breath.” Her mother wasn’t sleeping well at night either.
“Collabria Care is wonderful because they can go right into the home” and essentially become the eyes and ears for a primary care physician during hospice care, said Dr. Sweigert.
“People think hospice (means) end of life,” said Sweigert. “Most don’t realize that sometimes by going on hospice and focusing on symptom management you can avoid some complications and that can actually extend” and improve a patient’s quality of life.
“I’m one who likes to get the patients and hospice connected early in their illness,” said Sweigert. “It’s a no-lose situation,” he said. After learning about the benefits available to them, “Many patients say, ‘Why didn’t we do this sooner?’”
Don Swigert said he just wanted to get the appropriate care for his mother-in-law. “We knew we couldn’t” continue to do it all, he said.
“I thought, whatever will make her the most comfortable,” said Jane Swigert.
“And it worked out great,” said Don Swigert. “Frankly, I think her health has improved on hospice.” For one thing, Keane has fewer stomach and digestive problems, he said. Her legs are less swollen. Her wound care has improved.
“When she feels better she’s in a better mood,” said Jane Swigert. Her mother also sleeps better.
Hospice: meeting an unmet need
“As the percentage of our population over the age of 60 increases with the Baby Boomer generation and as medical advances keep people alive longer, there is a growing need for this specialized sort of care, which often goes unmet,” said Greg Miller, MD, the hospice medical director at Collabria Care.
Hospice services, such as those provided by Collabria Care and other agencies, can provide medical care, emotional and psychological support, and give needed “time off” to the family caregivers, said the agency website.
Volunteers may run errands, prepare meals, do light housekeeping or arrange for a hospital bed. Hospice can provide practical things like shower chairs, wheelchairs, walkers, bed rails and more.
After a loved one has passed away, professional bereavement counselors stay in touch with families and continue to provide compassionate support.
Medical, social worker, counseling and other health care providers visit as often as needed. The service is available 24-hours-a-day. However, the service does not provide in-home health care such as provided by a home health care aide.
“These services are a win-win situation for all,” said Miller.
“Patients and their families are cared for in a way that manages symptoms and reduces the stresses of illness; they are given a voice in what is most important to them for maintaining quality of life (which is much broader than treatment options); and care is coordinated among all of the patient’s providers.”
The result is an improved quality of life, fewer hospitalizations and ER visits, and reduced healthcare costs, said Miller.
Medicare primarily pays for hospice services from a variety of agencies that serve Napa Valley. There is usually no charge to the patients or family for hospice care.
Miller said one common misconception about hospice is that it means the patient has to give up all treatment.
That’s not the case, he said.
“You don’t give up treatment for your other conditions outside of the terminal diagnosis,” said Miller. The patient can keep seeing their primary care provider or choose to have a doctor with the hospice program manage their care.
At Collabria Care hospice, “I and the rest of the team make the home visits,” Miller said.
Some people on hospice recover enough so that they “graduate” from needing hospice care in the immediate future, the service notes.
While Keane’s hasn’t graduated, “She’s a great example of how hospice can be helpful and you don’t need to die when you come on hospice. You can live months to years with good care,” said Miller.
“She’s now more mobile, and able to get around the house and more comfortable in doing so. It doesn’t take away her disease,” said Miller. But, “Because we can control her symptoms she can remain more independent and mobile in her house which improves her quality of life.”
“They started coordinating and managing her care and her quality of life went up,” said Don Swigert. “She was relieved of the duty of (managing) her own health care.”
The family also benefited by hiring a full-time in-home caregiver who helps take care of Margaret.
“I liked it right away,” said Margaret of the help from Collabria Care. “It seemed to solve all my problems. I was able to paint more and relax,” she said. “I had more energy.”
“They’re all there to help me,” Margaret said of her hospice team.
Today, “I sleep like a log and eat like a horse,” said Margaret. “I have time to paint and read and study the Bible.”
Her religion has been a touchstone for the artist. A Jehovah’s Witness, Keane still goes to local services as often as she can. Sometimes she listens to church meetings via phone.
She may be 91, but she has much to live for, said Keane. “To survive each day is a wonderful gift.”
“If I don’t look in the mirror I feel pretty good,” she said. “We weren’t meant to die,” she said. “We were meant to live.”
“If I just sit quietly I don’t feel a day over 19,” she said.