PAs Fight for Right to Follow Patients Into Hospice

Ingrid Hein

August 23, 2019

"Every day I see someone we should have seen sooner," said Judy Knudson, PA-C, MPAS, Hospice and Palliative Medicine, University of Colorado Hospital, Aurora.

She recalls a Veterans Affairs (VA) patient she saw briefly after treatment. His cancer therapy was ending, and he was preparing to die.

Three months later, she saw him on a stretcher in the hospital hall. "He grabbed my hand and said, 'Thank you so much for everything you've done for me.' "

He had returned to the hospital to die.

"I had done nothing," Knudson said. "I felt so bad he was thanking me. He had no hospice, no home care, no support."

Knudson has ample experience in taking care of patients at end of life, and she knew he wasn't receiving such support. "I could have done so much more if I had the right services. I felt like I let him down," she told Medscape Medical News.

That patient stirred her to action and inspired her to start an outpatient hospice and palliative care program at her VA hospital.

"We started a pilot project that became a success. We got regional recognition to expand to all the Midwest VAs. That man gave me the push to get serious," she said.

Her accomplishment in the VA system is driving others to action.

We've identified thousands of PAs in primary care, oncology, and geriatrics who would love to follow their patients into hospice. Holly Pilewski, PA-C

"We've identified thousands of PAs in primary care, oncology, and geriatrics who would love to follow their patients into hospice," said Holly Pilewski, PA-C, Charles George Veterans Affairs Medical Center, Asheville, North Carolina.

It's even more important in rural areas, she explained. "When you have that close relationship and you've followed them for years, many patients don't want to go to hospice services, because they don't want to lose you as their care provider."

There's one exception to this rule, Pilewski pointed out. In the VA system, PAs can prescribe and provide service in a hospice setting. "They are their own entity," she said, "they don't bill Medicare."

"It's ironic," Pileski added, "that as a government employee for the VA, you can offer hospice services, but government regulations don't allow us to do this outside of the government."

New Guidelines

The fourth edition of the American hospice guidelines, issued earlier this year, gave PAs recognition as attendings in a hospice setting but limited their ability to certify their patients for hospice and to prescribe.

"The current rules state that you can do hospice, but you can't do hospice," Pilewski said. "It's not really allowing us to do anything," she added.

This creates a huge barrier to PAs who want to continue to care for their patients in hospice, Pilewski explained.

The Centers for Medicare & Medicade Services (CMS) has proposed changes to the guidelines that would give PAs the right to prescribe. An open discussion is currently underway. The CMS issued a change to the guideline and a call for comment on those changes. The call is open until September 27th.

The Association of Physician Assistants in Oncology (APAO) 2019 Annual Symposium used to dedicate one or two sessions to discussing palliative and hospice care; this year, the planning committee gave the topic a full day.

Pilewski will be presenting an overview on the issues surrounding hospice care at the meeting next week.

PAs don't have a lot of rights in the hospice setting. This needs to change so we can keep helping our patients Holly Pilewski, PA-C

"Many patients and providers are still confused about the difference between hospice and palliative care," she said. In her talk, she will bring home the message that all hospice care is palliative care, but that not all palliative care is hospice care.

"Right now, we don't have a good place where we fit in to hospice care," she explained. "PAs don't have a lot of rights in the hospice setting. This needs to change so we can keep helping our patients," she said.

Pilewski explained that in addition to a role as an attending, PAs have the skills to support the hospice team by helping with management of acute symptoms and by performing face-to-face visits for hospice recertification.

Knudson said that it's very important that people understand that palliative care is not end-of-life care. Palliative care is a way to help a patient and their family to cope with disease.

"When discussing palliative care, I like to call it supportive care," she explained. "It's about trying to improve quality of life to make each day as good as possible."

Knudson pointed out that oncologists often don't refer to palliative care until a week before death. They don't explain to the patient that palliative doesn't mean death. "But it becomes a self-fulfilling prophecy," Knudson said, if they need to jump straight to hospice care. "That's where they finally have 24/7 care, including a nurse, a chaplin, and a volunteer — a multidisciplinary team — all free of charge."

Knudson and Pilewski report no relevant financial relationships.

Association of Physician Assistants in Oncology (APAO) 2019 Annual Symposium.

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