Stakeholders in the hospice space and beyond have recognized the need for community-based palliative care, delivered in the home, and the time has come for the federal government to do the same.
Efforts have been underway among health care providers, state governments, advocacy groups and payers, among others, to make community based palliative care more accessible to patients and families. These are worthy efforts that hold genuine promise for expanding the availability of palliative services, but by their very nature they will not have the reach and impact of a coordinated, national program established by the U.S. Center for Medicare and Medicaid Services (CMS) that would be akin to the Medicare Hospice Benefit.
Hospices are uniquely positioned to provide this care, evidenced by how many of those providers are already engaged in palliative care. The Center to Advance Palliative Care (CAPC) reported last year that at least half of the in-home palliative care providers in the United States are hospices.
One hindrance to a national program is the lack of a standardized definition for palliative care. Some have said that if you ask 10 health care providers what palliative care means you will get 12 different answers, but to establish a national benefit a consensus will be necessary.
Such a definition would have to include a number of elements at a minimum. Those include medical and psychosocial care delivered by an interdisciplinary team wherever the patient calls home.
CAPC has developed a definition encapsulating these elements that could serve as a basis for standardization:
“Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.”
A key aspect of this definition is the ability to offer concurrent curative care, unlike the current hospice benefit which requires patients to forego other treatments. Such a move would not only improve the quality of life for thousands of patients and families struggling under the burden of serious, chronic or life-limiting illness, it would yield significant health care cost savings.
Community-based palliative care can reduce total health care costs by 36%, a Turn-Key Health paper indicated. These services can also reduce hospital admissions by 48%, resulting in 28% cost savings per patient day. In the outpatient setting, community-based palliative care has been shown to reduce emergency department visits by 35% and hospitalizations by 50%.
Home-based palliative care could reduce societal health care costs by $103 billion within the next 20 years, the nonprofit economic research group Florida TaxWatch said in a 2019 report.
Stakeholders have been gravitating towards palliative care expansion incrementally, including CMS to some degree, but these efforts have stopped short of a dedicated national benefit.
CMS has allowed Medicare Advantage plans to offer palliative care as a supplemental benefit, for example. According to an analysis by ATI Advisory, 61 health plans nationwide are offering in-home palliative care as a benefit this year. This is up from 29 in 2019. More than 455,000 beneficiaries are enrolled in these plans.
For 2020 however, the plans that are offering in-home palliative care are concentrated in relatively small geographic areas, mostly in Ohio, Pennsylvania, and parts of Minnesota, Washington state and Oregon, according to the ATI analysis.
The Center for Medicare & Medicaid Innovation’s Primary Care First initiative, set to begin in 2021, includes a Serious Illness Population payment model that could yield some positive results in terms of increased access to palliative care. However, the program will not be available in all 50 states, at least during its first year. We can expect progress stemming from this model, but it likely would not go as far as a dedicated benefit.
Within the industry itself, advocacy groups such as the National Hospice & Palliative Care Organization have for some time called for a community-based palliative care benefit.
National Coalition for Hospice and Palliative Care has spearheaded many of these efforts. The coalition wrote to congressional leaders in May to say that the ongoing pandemic has made the need for such a benefit all the more urgent.
“COVID-19 is an unplanned transformation of our health care system. The hospice and palliative care community believe that now, due to this unanticipated event, it is imperative that Medicare beneficiaries have access to a home and community-based palliative care benefit (Community-Based Palliative Care (CBPC) under a Centers for Medicare and Medicaid Innovation demonstration,” the coalition wrote. “This demonstration would be targeted to seriously ill individuals who are at an elevated risk for a poor prognosis if they contract COVID-19, including those that must sustain social distancing, as well as individuals recovering from COVID-19.”
Efforts have also been underway at the state government level in recent years. Laws exist in 27 as of Dec. 2018 that are designed to promote palliative care, according to the National Academy of State Health Policy (NASHP). Though details of the legislation vary among the states, they each serve the goal of bringing palliative care to more patients with serious, chronic, or life-limiting conditions.
Last year, Ohio, New Jersey and Kentucky pursued such legislation. In January, New Jersey passed a law designed to raise public awareness of palliative care. The state’s legislature is mulling over two more bills related to palliative care.
At the federal level, 2019 saw the formation of a new U.S. Senate caucus with the goal of expanding access to palliative care nationwide.
Barriers do exist to the establishment of such a benefit, and these would need to be addressed. Among them is the ongoing staffing shortage in the hospice and palliative care space and a widespread lack of awareness and understanding of what exactly palliative care is.
A Journal of Palliative Medicine study found that as many as 71% of people in the United States have little to no understanding of what palliative care is, including many clinicians in a position to refer patients to palliative care or hospice.
This too must change. Any attempt to establish a benefit would also require a substantial public education campaign to foster utilization.
Patients and families can benefit tremendously from palliative care, and the resulting cost savings as the population ages and continues to develop complex health needs including multiple comorbidities would benefit government and private payers as well as the general public.
The time is right. The need is great. The market for these services is already growing more robust despite limited payment opportunities. Now is the time to start moving the needle on a national palliative care benefit.