By Michael Ollove, Stateline

The COVID-19 pandemic, which has left an estimated tens of thousands of Americans with long-term debilitating symptoms, has prompted a renewed push to provide full palliative care services to seriously ill patients in their homes.

Palliative and hospice organizations are in talks with the Biden administration to create such a benefit as a demonstration project in Medicare, the health plan for older Americans.

If successful, they hope it would become a permanent benefit in Medicare and then be offered under Medicaid, the federal/state program that covers lower-income Americans, and commercial insurance plans as well.

Advocates point to numerous studies showing that palliative care results in a higher quality of life for patients, better management of their pain and symptoms and lower health care costs as a result of fewer hospitalizations. 

But most insurance plans, including Medicare and Medicaid, only cover comprehensive home- or community-based palliative care services for people in hospice care, which generally means they have a prognosis of six months or less to live and are forgoing treatment intended to prolong their lives.

Those pushing for changes say many who are not in hospice but who are afflicted with illnesses such as cancer, heart disease and Alzheimer’s would benefit from a full array of palliative care services delivered to them at home.

Added to that list now are COVID-19 long-haulers who, months after becoming infected, continue to suffer from lingering, life-limiting symptoms such as mental confusion, nausea, dizziness, blurry vision, hearing loss, paralyzing fatigue and dizziness. Approximately 10% of people who test positive for COVID-19 remain unwell for more than three weeks and a smaller proportion for months, according to an August study in The BMJ, a medical trade journal published by the British Medical Association.

The pandemic sparked the National Hospice and Palliative Care Organization’s latest push in its talks with the federal Centers for Medicare and Medicaid Services (CMS) to create a home- and community-based palliative care benefit, said Edo Banach, the group’s president. 

“Early on, it was clear to me that we are going to have a ton of seriously ill people, and almost none of them will qualify for hospice care,” Banach said.

The contagiousness of the coronavirus also is an impetus for action, he said, since many people who might benefit from palliative care are particularly vulnerable to infection. They shouldn’t risk a trip to the hospital during a pandemic if they can avoid it, he said.

“Anything that can bring home based palliative care to patients who are not hospice eligible (or desiring) is essential,” James Tulsky, co-director of the Harvard Medical School Center for Palliative Care, said in an email. “There are many patients with significant needs (medical, psychosocial) who are primarily homebound and could benefit from closer monitoring and more in-home services. Currently, the resources available for them are limited.”  

Home Care During a Pandemic

When Shelenea Harris invited a palliative care team into her western Virginia home last fall to help care for her father-in-law, Roy Harris, she made something very clear. “I told them I was adamant that I wanted the best care for him, and if they couldn’t do that, I didn’t want them to waste their time or mine.”

She got what she asked for. The team kept Roy living at home and surrounded by family, free from pain and the medicines that made him sick, and out of the hospital and doctors’ offices, as he fervently desired. 

“He wanted to have peace, and that’s what they gave him,” Shelenea Harris said.

It brought peace to the family as well, she said. During the pandemic, the last thing the family wanted was to place 85-year-old Roy in a congregate setting such as a residential rehabilitation center.

In one way—a grim way, to be sure—Roy, a retired trucker and grandfather known to his family as “Pawpaw,” was fortunate: He was able to receive a raft of services at home since he was eligible under Medicare for hospice care. But that’s only because he had a prognosis of six months or less to live.

The prognosis was correct almost to the day. He died in February at home with his family, half a year after beginning hospice care. 

Without the hospice eligibility that came with his six-month prognosis, Harris likely would have had to endure the hospitalizations he dreaded, leading to higher health care costs and more stress for all involved.

“A lot of frail elderly and chronically ill fall into that category. They have a year or two to live but don’t qualify for hospice,” said Dr. Balu Natarajan, chief medical officer of Seasons Hospice, a palliative and hospice care provider based in Illinois that operates in 19 states. 

Others who are seriously ill now but who might recover, such as COVID-19 long-haulers, also could benefit from palliative care.

Medical groups and hospice and palliative care providers have long argued for more community-based palliative care options, but Banach said they redoubled their efforts in March 2020 as coronavirus cases began multiplying. The urgency grew after it became clear that many of those infected were still incapacitated with a variety of life-limiting symptoms months after first falling ill.

The hallmark of a comprehensive palliative care is an interdisciplinary team of providers who address the medical, social, psychological and spiritual needs of the patient, including management of pain and symptoms. 

In recent years, a number of states have adopted measures to improve access to palliative care, but California appears to be the only state with a Medicaid program that covers comprehensive palliative care services at home for patients not eligible for hospice.

Advocates say the biggest roadblock to expansion of palliative care services is that many patients, policymakers and even medical providers continue to believe that palliative care is meant only for the dying. 

“Our health care system tends to do pretty well at treating disease, but where it often falls down is truly taking care of the person—helping them with the physical, emotional, and practical burdens of their disease,” said Kate Meyers, a senior program officer with the California Health Care Foundation, which works to improve health care delivery in that state.

“It’s not enough to only provide that kind of support to people at the very end of their lives through programs like hospice,” Meyers said. “We need to provide them with those supports much earlier, while they’re getting treated for their disease, while they’re making decisions about what treatment approach is right for them.”

A Problem of Definitions

Hospice and palliative care overlap, but they are not the same, even as many lay people often use the terms interchangeably. Palliative care can be administered apart from hospice, for patients not deemed terminal but still living with chronic, serious and life-limiting conditions.

If hospice-eligible, a patient can tap a range of services, both medical and otherwise, which can be provided in a hospital, at home or elsewhere in a community, such as a residential hospice, assisted living facility or nursing home. 

The services can encompass help with pain relief and symptom management, in-person medical care, personal care, patient and caregiver education and advance life planning, respite care and social services, as well as psychological, spiritual and grief counseling for the patient and family members. 

Palliative care often delivers a similar set of services, but it is not time limited.

Often patients get a patchwork of palliative care at home, advocates say, but not comprehensive services delivered by a team.

“We need to reach upstream of what is hospice eligible to provide support for people,” said Bob Parker, chief clinical officer and chief compliance officer at Intrepid USA Healthcare, a Texas-based company offering health care and hospice services in homes and congregate settings in 18 states.

Some Medicare managed care and commercial plans offer limited home- and community-based palliative services, but Medicare fee-for-service programs do not. While California is the only state to offer full community-based palliative care services through Medicaid, proponents in Arizona, Colorado, Florida and Oregon are pushing those states to follow suit, according to the National Hospice and Palliative Care Organization.

Demonstration Model

Providers would apply to the federal Centers for Medicare and Medicaid Services to participate in the new model advocates are seeking.

Banach said he and allies have had fruitful conversations with CMS about embarking on such a model. CMS declined a request from Stateline to talk about the proposal.

The group’s proposal calls for the expansion of a demonstration that CMS has been funding since 2016 called the Medicare Care Choices Model. Under that model, patients with terminal illnesses who did not want to abandon medical treatments intended to prolong their lives can receive hospice services through participating hospice organizations.

The model resulted in a 25% savings to Medicare, largely by reducing hospitalizations, according to a CMS evaluation published in October. Most caregivers also reported high satisfaction with the treatment provided.

If deemed successful, the demonstration could result in the expansion of the current Medicare palliative care benefit.

And that likely also would result in the extension of those benefits in state Medicaid programs. Medicaid and commercial insurance carriers often adopt benefits first adopted by Medicare.

Proponents also want the demonstration project to develop a baseline standard for what constitutes palliative care services.

California passed its law to provide a Medicaid benefit for home- and community-based palliative care for patients who are not hospice eligible in 2014. That law was an expansion of an earlier law providing home palliative care Medicaid benefits to children.

The need for such services, said Meyers of the California Health Care Foundation, is only going to grow.

“As the country faces an aging population and the need for people to be well supported at home and avoid unnecessary hospitalizations, palliative care is one of the tools to help keep people as well as they can be for as long as they can be,” she said.

“It isn’t just meant for people at the end stage of their lives, and we still have a long way for that to be widely understood.”

Roy Harris was eligible for the full array of palliative care services at his son’s Virginia home, which he received from Intrepid USA, the Texas-based provider. Harris suffered from a multitude of health conditions: congestive heart disease, chronic obstructive pulmonary disease, neuropathy and dementia. 

His daughter-in-law said his caregivers got his breathing sorted with oxygen and kept him comfortable. They bathed and gently shaved him. They did physical therapy to help with his walking and balance and taught family members exercises to help with his memory. They brought in a chaplain who prayed with him and sang hymns with the family.

“They allowed him to keep his dignity,” said Shelenea Harris. “He did not want to be in and out of hospitals. He was able to reminisce, spend quality family time, make memories.

“He was able to live the life he wanted to live.”

Stateline, an initiative of The Pew Charitable Trusts.