Nonprofit provides funding for end-of-life care

By Melissa Flores

Medicare is the major source of funding for hospice patients. But reimbursements from the federal program don’t cover the full cost of care for facilities that help people in the last stage of terminal illnesses or offer palliative treatment for patients undergoing substantial medical treatment.

“They have to find alternative sources of revenue,” said Jennifer Pettley, the director of communications for Hospice Foundation, a Central Coast organization.

This article is one in an occasional series on aging with dignity, independent living and public policy that affects both. For a complete archive of the articles, click here.

The foundation gave out $1.4 million in grants to 12 nonprofits this year, including the Natividad Medical Foundation, in Salinas, and the Community Hospital of the Monterey Peninsula’s Hospice of the Central Coast.

Hospice Foundation is gearing up for one of its most visible fundraisers of the season – the “Tree of Life” tree lighting ceremonies. The agency collects donations for a tribute light that will be lit in honor or remembrance of a loved one. The event is also a memorial for people who have lost a loved one. Each light represents a donation and is dedicated in someone’s name.

The Hospice Foundation supports nonprofits and hospitals that offer hospice or palliative care programs for residents in the Monterey, Santa Cruz and San Benito area. Palliative care is a program that offers pain and symptom management for patients who are still seeking treatment for a chronic or terminal illness. Hospice patients are those who have been diagnosed with a terminal illness and given less than six months to live.

To qualify for hospice, patients need to forego life-extending treatment.

Cathy Bargenquast, the assistant director of the Hospice of the Central Coast, said the services offered range from in-home medical assistance to social workers to grief counselors for the patient and friends. They also work with a network of volunteers who can offer services from massage therapy to aromatherapy to healing touch. The agency offers hospice for adult patients.

“Most of them are older,” Bargenquast said, though it is not unusual to see patients in their 50s or 60s.

Seniors who accept hospice service can revoke that request and go back to receiving treatment in the future, Bargenquast noted.

“People think once they’ve elected hospice that means they are choosing hospice service and are forfeiting the Medicare benefit for treatment,” she said. “They feel there is no turning back. If they start feeling better and they want to go through treatment, they can revoke it at any time.”

Most people who go into hospice after undergoing harsh treatments such as chemotherapy start to feel better initially.

“We’re able to get symptoms under control,” Bargenquast said. “They are not vomiting. Constipation (is gone.) They get their pain managed and start to feel better. They start eating and gain five pounds. It’s a really interesting progression in that way.”

She talked about one of the patients she worked with, an elderly woman who wanted to undergo one more round of chemo. The hospice staff recommended that the woman go onto hospice care to get her strength up before trying the treatment again.

“We sat down and talked about the recommendation with an adult child and she signed onto hospice,” she said. “No one felt she was really strong enough (for treatment.) We got her pain under control and she lived a better, good quality of life for three or four months.”

The patient decided not to go back for treatment.

“She died on hospice but it so enhanced her life,” Bargenquast said.

She said that even some patients who sign on for hospice are still in denial about death.

“Some are in denial until the day they die,” she said. “That’s really the goal of the social worker and spiritual counselor to move people to that place.”

With the $534,450 grant received this year, the staff and volunteers are going to be trained through the “We Honor Vets” program. It is a program created by the National Hospice and Palliative Care Organization to train clinical staff about the special needs of veterans.

“If they were in combat, were they in extreme heat or cold, what physical problems they might have, substance abuse, how to handle that,” Bargenquast said.

She noted that the closest full-service VA hospital is in Palo Alto, 75 miles north of Salinas.

“People don’t want to go to Palo Alto for their final days,” Bargenquast said. “We help them stay home.”

One of the key services that Hospice of the Central Coast offers is bereavement counseling for family members. They host Caregiver Connection meetings that give family members of someone with a terminal illness a chance to meet with others in similar situations.

“It gives them some socializing with people who are in the same boat,” Bargenquast said. “They see its okay to get angry. It’s more than a support group. It’s a really good connection.”

While Hospice of the Central Coast focuses on adults in need of hospice care, the foundation donation to Natividad Medical Foundation will allow them to expand their palliative care services to perinatal and pediatric patients.

From the beginning they helped the hospital “put a perinatal bereavement program for moms and dads to come in to have a stillbirth,” said Judith Lavoie, the nursing director of women’s and children’s services. “Years ago they were a great support of helping us launch it. We’ve built a pediatric palliative care program and they’ve been great supporters.”

Lavoie said the grant this year of $17,100 will help the hospital refurbish quiet spaces for family bereavement counseling. They also want to remodel a hospital room so it is more like a family space, with couches, tables, a small refrigerator and a microwave.

“They’ll have the ability to sleep there, eat there, and if they chose they can go out and bring in food and keep it in the refrigerator,” Lavoie said, of families with a child diagnosed with a terminal illness. “They can do family activities together in the room.”

Lavoie said the improvements have been a dream of the staff members for a while.

“With Natividad being a safety net (hospital) we serve the underserved,” she said. “We want to make sure equal treatment goes to anyone that walks through our door.”

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