The coronavirus pandemic has spurred demand for serious illness and end-of-life care as it continues to spread globally. COVID-19 has exposed gaps in America’s fragmented healthcare system, as well as opportunities for education and access to hospice and palliative care.
According to palliative care experts BJ Miller, MD and Sonya Dolan, founders of Mettle Health, educating the public and clinicians in other disciplines about palliative care can help providers work towards better access to these services.
“The demand for palliative care is increasing explicitly and also implicitly, as the health system and front-line clinicians are confronted with existential problems, end-of-life problems and the limits of this. that medicine can and cannot do, ”Miller said during the Hospice News Palliative Care Executive webinar series. “It’s a real time for palliative care. In a way, it feels like the pandemic is ending a lot of the smoldering stuff beneath the surface that is obvious to some people, but out of sight to many. “
It is estimated that 40 million people need palliative care each year worldwide, of which only around 14% receive it, according to a report by the World Health Organization (WHO). Up to 71% of people across the country have little or no understanding of what palliative care is, including clinicians able to refer patients to palliative care or a hospice, according to A journal of palliative medicine to study.
Although there is no standardized definition of “palliative care,” the United States Centers for Medicare & Medicaid Services (CMS) defines the term as “patient and family-centered care that optimizes quality of life. by anticipating, preventing and dealing with suffering. Palliative care throughout the disease continuum involves meeting physical, intellectual, emotional, social and spiritual needs and facilitating 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 us in it, is huge. Creating a language, structures, systems and programs that bring together, connect and reconnect with these pieces of life is really the work that needs to be done, ”Miller said. “From there, society can sensitize, soften and open up to it, then politics can sink, policy can sink, and so on. We just have to work with it, build on it and our constructions and our structures that always separate life from death. “
Access to palliative care depends to a large extent on the doctor’s referral and his geographical location. Referral management is one of the main obstacles to stunting hospice palliative care. Referral management was the biggest concern for nearly 50% of 328 providers who took part in a 2020 survey, according to a study by the National Hospice & Palliative Care Organization (NHPCO). A lack of understanding of palliative care among clinicians in other settings, as well as among patients and families, were key barriers.
“The referral part is why we launched Mettle Health – to remove the referral aspect of [palliative care]. It’s usually behind a wall, and you have to have a certain type of cancer, you have to live in a certain place, and that’s kinda ridiculous, ”Dolan told Hospice News. “It’s our way of pushing it aside and saying these conversations are for everyone, and everyone should be able to access them. In addition, we hope that the shift to value-based care will help. Based on the way our system is set up with payment, there isn’t much for palliative care. Therefore, places do not offer it because it does not make them much money.
Medicare currently covers the services of palliative care physicians, as well as some licensed independent practitioners, but it does not support the full interdisciplinary model of care. Advocates of the hospice palliative care space, such as NHPCO, have long called for a dedicated community hospice hospice advantage 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 large number of patients who died unexpectedly during the pandemic has highlighted a fragmented healthcare system. In total, more than 675,000 people have died from the virus nationwide, according to recent data from the U.S. Centers for Disease Control and Prevention (CDC). Fragmentation of healthcare delivery is the systemic misalignment of incentives or lack of coordination leading to inefficient allocation of resources or harm to patients, negatively impacting quality, costs 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 population-based in the current system – operationally, financially and clinically, the Commonwealth found. Fund.
The United States lags the global curve in overall coordination of care across the continuum. A 2019 Commonwealth Fund survey of 13,000 primary care providers in 11 countries found that less than half, or 49%, of people in the United States had received information from specialists about changes to health care plans. care or medication for their patients, compared to at least 7 out of 10 providers in France, New Zealand and Norway.
While the pandemic has wreaked havoc on the health system as a whole, it could also help identify opportunities for improvement and change, according to Miller.
“We have the opportunity to think at the system level and at the primary palliative care level and build on that work,” Miller told Hospice News. “In a sense, it’s treating the health care system like our patient, because we know they need palliative care. I hope that palliative care will become a growing part of the puzzle in the future, not only by doing our work with patients and families, but also by bringing our attention and the knowledge we have to the system itself.