Avow Hospice opens outpatient palliative care center

Jan. 24--Janice Feenstra knows some days are better than others with breast cancer that is treatable but not curable.

When her will is stronger than the disease, the 61-year-old makes wreaths at home, quilts and dotes on her five grandchildren.

When the invasive breast cancer overpowers her, the social worker or others on the palliative care team at Avow Hospice in Naples listens, holds her hand and reignites her tenacity.

"I don't think people realize: Where your mind is at is very much how your disease is going to go," she said. "I think I'm here because I have the attitude that I have."

Feenstra, of Naples, has been diagnosed with breast cancer four times since 1995. The first three times were noninvasive, and she went through treatment and rebounded.

In 2014 she was diagnosed with HER2-positive breast cancer that is more aggressive and required extensive chemotherapy and anti-nausea and pain medication. Some medications she will take the rest of her life.

"We have a plan B and a plan C and if they can come up with something new," said Feenstra, who was a registered nurse before the cancer forced her to give it up. "You are always hoping they come up with something new."

Separate from her medical care for fighting the disease, Feenstra receives palliative care from Avow, which involves pain management so she can get out of bed and function every day, and other services that address her emotional and spiritual needs to keep going.

The nonprofit Avow recently opened an outpatient center for palliative care for patients to come in for services, an option that is preferable for some to get out of their home and network with others facing similar debilitating illnesses.

Unlike hospice patients who have a terminal illness, palliative care can coincide with ongoing medical care for an illness.

"Cancer doctors treat the disease, but we treat the symptoms," said Dr. Natalia Keyser, medical director of the palliative care program at Avow. "We treat the pain, the shortness of breath, the anxiety that comes with a serious illness."

Illnesses typically involved are cancer, dementia, Parkinson's disease, chronic obstructive pulmonary disease and other chronic conditions that compromise quality of life, she said.

Patients can be any age, although Avow has yet to roll out services for children.

"They can live with chronic illness for a long time," Keyser said.

The palliative care team at Avow has been making home visits for many years where the team involves a physician, a nurse practitioner, a social worker and a chaplain, and there are companion services like massage therapy and reiki treatment. Services also include preparing a living will and care plan goals.

"We do house calls and nursing home calls," Keyser said.

Many patients with mobility limitations will not be able to go to the new Lyon Center for palliative services on the Avow campus at 1095 Whippoorwill Lane in North Naples. They can continue with home visits from the team.

Patients who can come to the center will be encouraged to go that route, which can mean seeing several members of the team with one visit, Keyser said.

Avow is one of two hospice organizations in Collier County. The other is Vitas Healthcare, which offers palliative care services, according to its website. In Lee County, Hope Hospice provides palliative care for Lee residents.

Palliative care also is provided by hospitals, and it is unclear how many hospice organizations have expanded into the realm of palliative care, according to the National Hospice and Palliative Care Organization in Virginia. There isn't a separate billing option apart from hospice services, spokesman Jon Radulovic said.

In 2016 the palliative care team with Avow provided 2,700 hours of services to adults in their homes or nursing homes, according to Avow spokeswoman Kit Chamberlain.

"Palliative care is kind of where hospice was years ago," Chamberlain said, referring to limited awareness of the hospice mission of comfort care for people near the end of life. "It's gaining traction, but we still need to educate what it is."

Medicare and private insurance can be billed for palliative visits by the physician or nurse practitioner but not for visits by a chaplain or the complementary therapists such as reiki therapy. Philanthropy is critical for being able to provide the non-reimbursable services, Chamberlain said.

Patient volume projections at the outpatient-based Lyon Center are not available, but the expectation is that the program will grow, just as greater awareness is building on a national scope of its benefits to patients and their families.

"We are going to grow very fast," Keyser said.

At the same time, it's a challenge to build awareness among physicians that palliative services can coincide with disease treatment, so patients should be referred early after diagnosis, she said.

Often the referral from a physician is done when patients are in advances stages of cancer or other disease and will be transitioning to hospice care soon, Keyser said. Hospice care is where two physicians determine an individual is terminal with months left to live, and the focus becomes comfort.

Feenstra, the Naples patient, said the Avow palliative care takes the time to listen to what's going on in her life, and she recommends anyone facing a chronic and incurable medical condition to pursue it.

"I see the social worker, and she listens to me rant and rave," Feenstra said. "She doesn't let me wallow in self-pity and 'why did this happen to me,' because it's just not good."

Feenstra said she's already outlived her life expectancy and that she intends to stick around to see all her grandchildren grow up, go to college and get married. She calculates that as 26 years.

"Avow helps me keep my head straight so I can get to 26 years," she said.

She's excited to start seeing the team at Avow's new center, especially to meet other people in her circumstance of a chronic and incurable disease. It will keep her connected, similar to how making wreaths and networking on quilt-making fills a need.

"If you don't stay busy when you have something like this, then you cry a lot," she said. "I try to live like I don't have anything wrong with me."

Avow embarked on a $7 million fundraising goal for the Lyon Center that also houses administrative offices. The new building is 24,000 square feet and cost $15 million; the nonprofit organization had the remaining $8 million in the bank.

Thelma Lyon, a Naples resident, gave a significant gift for the project. At her request, the amount is confidential.

Information:239-261-4404 or www.avowcares.org.

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