The National Hospice and Palliative Care Organization is proud to be part of the international community that is focused on care for the seriously ill and those nearing the end of life. Such an important part of this engagement is through ehospice. In reading and sharing the content published by our international neighbors, I’m struck by two things. First, the way care is provided, paid for, and regulated in the United States is vastly different than so many other countries – most, in fact. More importantly, however, is the strong passion and commitment that we have in common.
The value and necessity of person-centered care for those most in need transcends borders and language; we are unified by our mission to serve humanity. There can be no higher calling. And for the hundreds of thousands of palliative care and hospice professionals and skilled volunteers who serve, I must say thank you.
For much of the world, there is no difference between palliative care and hospice care. Many consider them one and the same. In the U.S., that is not the case. That is a double-edged sword—for there is a benefit and a detriment that lies in this division. Although the U.S. is often seen as a leader in this area, I believe that we have a lot to learn from the rest of the world about how to provide boundaryless care that is based on need, not months.
For the benefit of ehospice readers outside the U.S., I thought I could provide a bit of background and explain one of the major strategic priorities at NHPCO involving community-based palliative care.
What we know now as the Medicare hospice benefit was really born out of a desire for whole person care, and a realization that people are complicated, and they have many different needs, especially nearing the end of life. Those needs require very different disciplines to provide appropriate care in a coordinated manner. It’s something that not only people who are dying need, it’s something that everybody needs.
Dame Cicely Saunders knew this when she launched the modern hospice philosophy of care in London at St. Christopher’s Hospice in the sixties. Her success came to America through the Yale School of Nursing and the Connecticut Hospice. Then, in 1978, community-based hospice organizations throughout America began a demonstration project under the administration of President Jimmy Carter. It grew to be an actual benefit through Congressional legislation and a permanent part of the Medicare program in 1983. From the beginning, this legislation was bipartisan, led by Senator Bob Dole and Representative Leon Panetta, one a Republican and one a Democrat. The passage of this legislation is a reminder that Congress can work collaboratively for the benefit of all Americans.
Since those days, the Medicare hospice benefit evolved from a grassroots community-led movement to an integral part of the U.S. health care delivery system. In the March 2021 MedPAC Report to Congress (a congressional advisory organization), 1.6 million Medicare beneficiaries, 52%, who died availed themselves to hospice care in 2019. And while hospice served primarily people with a cancer diagnosis in the early years of the benefit, cancer accounted for 17.7% of Medicare hospice spending in 2018. One of the increasing prognoses the field is facing is Alzheimer’s and dementia.
It is also important that we recognize that although we succeeded in getting half of the population to avail themselves of hospice at the end of life, this half tends to be older, predominantly white, and middle-class. It is not a universally accepted benefit in the U.S. There is under-representation in the Latino community, in the African American community, and other minority communities, and that’s work that I think we need to do. We have this great benefit and the arguments that we have been making about how it cares for people have not necessarily landed with the entire population.
Then, importantly, the benefit has not kept up with the times. As the Medicare hospice benefit was passed in 1983, it was intended for the last six months of life and does not allow for concurrent care. At that time, there were concerns about costs and the Office of Management and Budget felt it necessary to put some controls in place to make sure that the hospice benefit did not break the bank. No one knew the fiscal impact of this benefit. Well, now we know the answer; it does not cost more money to provide hospice care. It costs less money. So, some of the controls that were put into place no longer make sense.
Some of those original controls resulted in people getting far less than six months of hospice care and sometimes not getting care at all. Because if you must give something up – curative-focused treatments – to get the palliative care services of hospice, even the theory of giving up something in order to get something else did not work and people often fail to access hospice in a timely manner. And certain socioeconomic categories and underserved communities may be even less likely to give something up – even if it means they would get something better suited to their needs. There are some things that we need to do and change and evolve. There are some ways in which Medicare has evolved that need to be considered.
So, where are we going? First, more flexibility – and flexibility means that people should be able to get curative care and get hospice care at the same time: concurrent care. The conventional wisdom was that if you give people access to all the curative-focused services that they are eligible for and add an additional hospice benefit, you are going to spend more money. Well, there is a demonstration model under Center for Medicare and Medicaid Innovation (CMMI), the Medicare Care Choices Model (MCCM), that has blown that theory out of the water.
The MCCM stands for the proposition that people who might otherwise have been reluctant to choose hospice care, if they are given access to a set of hospice-like services at the same time as other care interventions under Medicare, what happens? Well, they chose more hospice-like care and less futile care. Because as people get sicker, they are more tired of the dysfunctional health care system that we have in this country. And they want more of the functional health care system that is represented by the hospice model of care. The Medicare system ends up spending less money, people end up being happier, and quality of care goes up. That is a change that we are advocating for. The MCCM demonstration has shown that it works.
The hospice requirement of six months prognosis for eligibility is arbitrary. Many people assume it is based on medical practice, but it was financial from the beginning. This country would be better served by having a benefit that is not of limited duration but is based on an individual’s needs. The arbitrary six-month annotation results in some people having hospice for six days because of compliance concerns. Late referrals are a problem and I think we can address some of those issues through having no limitation on the back end of care access.
Think of these flexibilities as a three-legged stool: they are all necessary to move hospice forward. All legs are necessary for the stool to not topple over. And so, the third leg of that stool is community-based palliative care. This is where the U.S. has the most to learn from other countries.
Despite the rhetoric and argument in America, there is no standard community-based palliative care benefit. There is no definition of community-based palliative care outside of hospice. That’s something we need to change. You should not have to give up services to get interdisciplinary person-centered care in the community.
And we have learned much from the COVID-19 pandemic. I had the honor of being invited to the White House in March of 2020. I met with the administration and almost immediately it became clear to me that this public health crisis could be serious. What we saw happening was a portion of the population being encouraged to stay at home and not go to the hospital, unless if they needed immediate care. But what is available to folks who are asked to stay at home to quarantine, to stay isolated, to not see their family, to figure out their nutrition? Well, people who had access began to utilize a world of apps and telemedicine that became more common to many Americans. But what about the many people who do not have the means or the apps to access services while staying at home, people who are depressed and isolated? Our nation does not have a benefit to roll out to that population. Community-based palliative care could serve those people.
We should think of community-based palliative care as something for people who are at the earlier or indeed the later stages of dying from dementia, COPD, or cancer. It is also something that would be beneficial for someone who has just contracted a deadly virus. And remember, this person-centered, interdisciplinary team model of care will support those family caregivers who are essential to care delivery. We do not have a benefit that allows us to wrap a person facing serious illness in community-based supportive services, other than Medicaid. And under Medicaid, you must impoverish yourself in this country to get access to those services. If you are not on Medicaid – or extremely wealthy – good luck.
One thing that NHPCO has been advocating for is to build that community-based palliative care benefit into Medicare. The time is now for CMMI to build off the successes of its Medicare Care Choices Model to establish clear criteria for core community-based palliative care services in the U.S. and improve access to needed care for Medicare beneficiaries experiencing serious illness in our most vulnerable communities. There is a significant evidence base to support the need for a CMMI supported community-based palliative care effort that would lead to improved quality and cost outcomes for beneficiaries experiencing serious illness. This is especially important for seriously ill patients with comorbidities who are at higher risk when battling conditions such as COVID-19.
Building upon lessons learned from the MCCM is a logical way to move forward. So much so, that legislation supporting the call for such a demonstration has been introduced by Senators Jacky Rosen (D-NV), John Barrasso (R-WY), Tammy Baldwin (D-WI), and Deb Fischer (R-NE). The Expanding Access to Palliative Care for Seniors Act directs the implementation of a demonstration model for community-based palliative care.
Given the challenges we as a provider community have been coping with over the past 17 months, some might wonder if now is the time to call for this important demonstration. There is fatigue across the country, we have been through the first and the second and maybe the third wave of COVID and things continue to be serious. But the reality is, this is why we are here. We have been called to provide serious illness care to people, to support those closest to them, and to eliminate real or perceived barriers to access. This is a moment where folks need the compassionate high-quality care that we know how to provide. And I am so proud to be a member of this global community. We looked to England when we launched the hospice benefit 40 years ago, and the rest of the world continues to be a beacon as we look to expand our care model.
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Edo Banach is President & CEO of the National Hospice and Palliative Care Organization. He previously was the Senior Advisor and Deputy Director of the Medicare-Medicaid Coordination Office at the Centers for Medicare & Medicaid Services and Associate General Counsel at the Visiting Nurse Service of New York. Prior to that, Edo Banach was the Medicare Rights Center’s General Counsel. Edo has also practiced health law at the firms of Latham & Watkins and Gallagher, Evelius and Jones, and clerked for U.S. Judge John T. Nixon of the Federal District Court for the Middle District of Tennessee. Prior to attending law school Edo worked for the New York City Department of Homeless Services and Mayor’s Office of Operations. Mr. Banach holds a B.A. from Binghamton University and a J.D. from the University of Pennsylvania Law School.
This article was original published on ehospice – editorial edition on August 25, 2021.
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