Changemakers: Tom Koutsoumpas, CEO, Capital Caring Health

Tom Koutsoumpas, president and CEO of Capital Caring Health, has worked in the hospice field since the beginning. He advocated in the 1970s and 80s for the establishment of the Medicare Hospice Benefit, which now covers about 98% of the hospice care provided in the United States.

In addition to his work as a provider, Koutsoumpas is president and CEO of the National Partnership for Hospice Innovation ( NPHI ), a consortium of more than 70 nonprofit hospice and palliative care providers that collaborate to identify best practices and spur innovation. NPHI provider members serve a combined 121,000 patients daily.

He is the co-founder of the Coalition to Transform Advanced Care ( C-TAC ), a national, nonprofit advocacy group dedicated to improving quality of life and health care for the seriously ill. He also helped establish Healthsperien, a consulting and legal services firm focused on advancing hospice and serious illness care.


Can you speak to some of the most significant changes that you’ve seen impact end-of-life and serious illness care in recent years?

At the start, there’s the acceptance and the growth of end-of-life care and palliative care. I call it “advanced illness care,” because it’s sort of more encompassing. What we’ve seen over the years has been an extraordinary shift from what was kind of a very small end-of-life focus. People were less informed, less knowledgeable and less educated about the availability of hospice, and it was often used just at the very end.

When you look at what’s happening now, the door seems to have swung wide open. There’s a thirst for information, for accessing that kind of care, and an enthusiastic embrace by many people. The caregivers are relieved to think that there are models out there now that really comprehensively care for people with advanced illness. I love to see how people are embracing it. Utilization is up, and I think we’ve seen a tremendous opportunity for people to access these services in communities across the nation.


COVID-19 precipitated quite a bit of change in the hospice industry. What are some of the long-term impacts that you’re anticipating?

More people are recognizing the importance of care in the home. I think there’s a real acknowledgement now that care can be delivered adequately in the home in a very robust way. People are actually looking for that care. That hadn’t been so well understood, that you can actually do almost everything in the home that you can do in an inpatient or outpatient setting. That is a tremendous change.

The use of technology effectively and efficiently is obviously a shift as well. That’s really meaningful. It’s not just a Zoom call. You can actually take vitals now through technology. You can examine a person and see very specifically what their issues may be via telehealth. This has made a huge difference in reaching people and providing more access. When you have to get in a car and go see someone, that could take hours. You can get them on screen in five minutes and really dialogue with them for a long time.

These are the kinds of things that COVID has introduced to us to, and made mainstream over the last year and a half. People have grown comfortable with it. A lot of people were frightened of technology. They’re worried about how to use it. Can they use it? Is it effective? We’ve crushed that notion that it’s difficult. I think everyone can really get into it now and use it for care delivery.

Of course, NPHI’s mission is to drive innovation, particularly among nonprofits. Can you tell me about some of the innovations that the organization has fostered?

One of the most exciting innovations is really the advanced cardiac care initiative. It’s the first partnership of its kind with the American Heart Association (AHA). The [AHA] CEO, Nancy Brown, is personally very engaged in this initiative as well. We think it’s transformational for people with heart disease.

People with end-stage heart disease in particular often don’t access advanced illness care or hospice care. We’ve broken the barrier there. We’ve developed a comprehensive guide that will give [patients and families] a lot of information about how to get good cardiac support at home.

NPHI is also really moving forward with addressing the issue of equity and diversity and reaching underserved communities. Capital Caring Health, a member of NPHI, has established the Center of Equity, Inclusion and Diversity to focus on ways to create better access within our communities among people of color. It’s a national disgrace that people in communities of color can’t access our model in a very robust way. We want to break that down as well.

We’re really working on advancing primary care at home and integrating that into our programs to create that continuum of care.

The other thing that we’re really proud of are what we call safety net programs. We turn no one away. We embrace people regardless of their ability to pay. We care for people with the most complicated, advanced illness conditions that you can have. We do it in their home, and we do it very comprehensively.

We’re looking at continuing to develop ways to work with payers. Payers are growing in stature across the nation. Medicare Advantage is the fastest growing part of Medicare. We are working with payers to develop relationships.

One thing that we’ve done is establish Advanced Illness Partners. We’ve put a group together to work within the [Center for Medicare & Medicaid Innovation] direct contracting model. People are calling us daily to see if they can join us. The bottom line is, again, we are approaching a new way to deliver care. That’s a tremendous innovation.

One more thing we’re doing is we’re looking at integrating better mental health support within our care delivery model. We recognize that, particularly through COVID, mental health for not only the patient, but the family, really needs to be addressed. We have to incorporate a more robust mental health support system in our programs,

At the end of the day, we want to be the providers in the communities that take a comprehensive approach to care delivery, caring for people early in the trajectory of advanced illness all the way through to the end of life. We’re creating a seamless continuum.

When we created the Medicare Hospice Benefit, I was part of that in 1982. The whole notion was to take a comprehensive approach to care delivery for the patient and the family. I feel like we’re true to that mission. We’re just expanding that through this continuum. We are taking that original concept and expanding it into a much broader initiative.

Can you add some additional color on the diversity initiatives the center is pursuing?

We’re focusing on two things. One is internal, how do we make sure that we include equity is an important part of internal operations. This includes looking carefully at hiring and integration. Inclusivity is important to us.

Externally, we are looking at how we move the needle statistically in our communities to better care for people in underserved areas. We are pursuing aggressive outreach to create programs in underserved communities in Washington, D.C., for instance, where we at Capital Caring are looking at the area’s poorest communities, which happened to be in the District of Columbia, Wards Seven and Eight. We are rolling out new programs in those two wards. We’ve got to initiate programs and then measure their success. We need to make a difference in those communities.

What are a few examples of how hospice and palliative care providers need to adapt to the changing health care environment?

I’m proud to say that the members of NPHI are all exactly what the title says. They’re all focused on innovation and embracing quality. Obviously, programs are smaller or larger, or urban or rural. Everybody is working together to help each other to develop those various initiatives. When we get together for meetings, we have what we call “quick rounds” of ideas, when our programs talk for a few minutes about an innovation within their program, and present it to the rest of the group.

We’re not an association. We’re a group of programs that have come together to innovate together, all under the mission of the non-profit community approach.

Could you say more about your work at the Coalition to Transform Advanced Care (C-TAC)?

My co-founder, Bill Novelli and I got together shortly after my mother passed away. Bill was a former CEO of AARP.

My mom passed away in the Capital Caring hospice program. The hospice care she received was beautiful and perfectly executed. But that pre-hospice period, the four or five years of chaos before she went into Capital Caring was a disaster.

I recognized that we did a good job at creating the Medicare Hospice Benefit, but I think we really missed this pre-hospice population. Why can’t we take the model and move it to a broader part of this advanced illness arena, use the same concepts and the team approach? It really makes sense to me. We created an organization that would advocate for that.

We invited about 25 health care leaders from around the country and invited them to come to Washington [D.C.]. Bill and I said, “We’ve got this idea and we’d like to bring you to the table.” So we got a big room. These leaders were from nursing homes, hospices, health systems, AARP, payers and advocacy groups. We talked about how hospice works beautifully, but we need to do something about the longer-term advanced illness. Caregivers are burning out. Families are struggling without support. When you call the doctor they tell you to go to the E.R.. I can’t count the number of times I took my mom to the E.R. in the middle of the night.

We went around the table and at the end concluded that this was a national disaster, and that we have to take this on. We had to ask if the stakeholders were willing to put aside their competitive spirit to create a better health care system for people with advanced illness. That was the beginning of C-TAC.

As we all know, a major issue facing the industry is staffing shortages. How do you think those issues will affect change in the industry, for better or worse?

It’s forcing us to look at new ways to deliver care and get new kinds of people involved. Certainly the embrace of nurse practitioners in a much bigger way is part of that, but also others in the care system. We use CNAs in a much more broadly. They’re some of the most important people in the clinical model. They’re closest to the family, and they do so much direct support. We are using our social workers in many new different ways, certainly in the mental health area. There are important ways to realign the care delivery system.

I think that we have an advantage in that our folks really embrace our mission. Yes, there’s a nurse shortage, but I tell you when you want to work for an organization that is mission-oriented and opens their arms to people, staff tend to love it. I think that’s our biggest opportunity and advantage over others in terms of staffing.

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