The coronavirus pandemic has spurred demand for serious illness and end-of-life care as it continues a global spread. COVID-19 has exposed gaps in the fragmented U.S. health care system, along with opportunities for hospice and palliative care awareness and access to grow.
Spreading awareness of palliative care among the public and clinicians in other disciplines can help providers work toward greater access to those services, according to hospice and palliative care experts B.J. Miller, M.D., and Sonya Dolan, founders of Mettle Health.
“Demand for palliative care is going up in an explicit way and also in an implicit way, in so far as the health system and frontline clinicians are dealing with existential issues, dealing with end-of-life issues, and dealing with the limitations of what medicine can and can’t do,” said Miller during the Hospice News Palliative Care Executive webinar series. “This is a real moment for palliative care. In a way, it feels like the pandemic is pulling the covers off on a lot of things that have been smoldering beneath the surface and obvious to some people, but out of sight for many.”
An estimated 40 million people are in need of palliative care every year worldwide, with only about 14% of people receiving it, according to a report from the World Health Organization (WHO). As many as 71% of people across the country have little to no understanding of what palliative care is, including clinicians in a position to refer patients to palliative care or hospice, according to A Journal of Palliative Medicine study.
While no standardized definition exists for “palliative care,” the U.S. Centers for Medicare & Medicaid Services (CMS) defines the term as “patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice.”
Using less clinical language when discussing palliative care with patients and families can help promote better understanding, according to Miller.
“Getting palliative care out of clinical language and making it more accessible, seeing ourselves in it — that’s huge. Creating a language, structures, systems and programs that reunite, re-link and reacquaint these pieces of life is really the work that needs to be done,” said Miller. “From there, society can sensitize, tenderize and open to this so then policy can flow, the politics can flow, etc. We just have to work with it, build on it and our constructs and our structures that always separate life from death.”
Access to palliative care hinges largely upon a physician’s referral and geographical location. Referral management is among the biggest obstacles stunting palliative care growth. Referral management was the biggest concern for nearly 50% of 328 providers who participated in a 2020 survey, according to National Hospice & Palliative Care Organization (NHPCO) research. A lack of understanding of palliative care among clinicians in other settings, as well as among patients and families, were key barriers.
“The referral piece is why we started Mettle Health — to remove the referral aspect of [palliative care]. It is generally behind a wall, and you have to have a certain type of cancer, you have to live in a certain place, and that’s a little ridiculous,” Dolan told Hospice News. “This is our way of pushing back on that and saying these conversations are for everybody, and everyone should be able to access them. Also, a move to value-based care is hopefully going to help. The way our system is set up with payment, there’s not a lot in it for palliative care. Therefore places do not offer it because it doesn’t make a lot of money for them.”
Medicare currently covers palliative care physician services, as well as some licensed independent practitioners, but it does not support the full interdisciplinary care model. Advocates in the hospice space such as NHPCO, have long called for a dedicated community-based palliative care benefit within Medicare. In July after a group of U.S. senators introduced bipartisan legislation that would direct the Center for Medicare & Medicaid Innovation (CMMI) to develop a demonstration to test such a model.
The sheer number of patients dying in an unexpected way during the pandemic has shed light on a fragmented health system. All told, upwards of 675,000 people have died nationwide from the virus, according to recent data from the U.S. Centers for Disease Control and Prevention (CDC). Fragmentation in health care delivery is the systemic misalignment of incentives or lack of coordination leading to inefficient allocation of resources or harm to patients, adversely impacting quality, cost and patient outcomes, according to a 2008 Commonwealth Fund report.
Systemic fragmentation in the United States is difficult to dislodge, steeped in the history and culture of medicine and embedded population-wide in the current system — operationally, financially and clinically, the Commonwealth Fund found.
The United States falls behind the worldwide curve when it comes to overall care coordination throughout the continuum. A 2019 Commonwealth Fund survey of 13,000 primary care providers across 11 countries found that less than half, or 49%, of those in the U.S. received information from specialists about changes to their patients’ care plans or medications, compared to at least 7 out of 10 providers in France, New Zealand and Norway.
While the pandemic has taken a toll on the health care system at large, it could also be helping to identify opportunities for improvement and change, according to Miller.
“We’ve got an opportunity to think at the system’s level, and the primary palliative care level and build on that work,” Miller told Hospice News. “In a sense, it’s treating the health care system as our patient, because we know it needs palliative care. I’m hoping that palliative care becomes an increasing part of the puzzle going forward, not just doing our work with patients and families, but also turning our attention and the knowledge that we have on the system itself.”
