Tom Koutsoumpas: A hospice care CEO wants to ease the ordeal of dying.

Excerpt – Mr. [CEO of Capital Caring Health who is now the nation’s largest non-profit hospice and advanced illness provider Tom] Koutsoumpas is eager to correct misconceptions about hospice care. “People think it means you’re giving up and going home to die. But we find that with good symptom management and the support of family, patients often do better and live longer,” he says from Capital Caring’s offices in Falls Church, Va. President Jimmy Carter, for example, is still with his family, after announcing in February that he would forego additional medical care to spend his remaining days in hospice at home. “It’s about living your fullest at the end of life, without pain and with the people you love,” Mr. Koutsoumpas says.

[..] Mr. Koutsoumpas decided to devote himself to fixing aspects of American health policy, particularly the country’s approach to end-of-life care. “Generally our medical establishment is trained to cure, not to acknowledge that they can’t solve a problem,” he says. “But there are so many people we can’t make healthy, so we need to create a better support system for a better life.”

Research shows that hospice care tends to lower end-of-life costs and improve patient satisfaction by curbing futile late-stage medical interventions. “It’s for the patients who probably shouldn’t have to struggle with that fifth round of chemo,” Mr. Koutsoumpas explains. [..]

Hospice care was once dominated by nonprofits like Capital Caring, which receives much of its funding from foundations and individual donors, as well as Medicare reimbursements. Today nearly two-thirds of hospice companies are for-profit, and the number of hospices owned by private-equity firms tripled between 2011 and 2019, according to research published in the journal Health Care Policy and Law. The federal government just released ownership information on more than 6,000 national hospices and 11,000 home health agencies to increase transparency.

“I’ve worked with for-profit and nonprofit organizations, and there are great examples of both,” says Mr. Koutsoumpas, who is also president and CEO of the National Partnership for Healthcare and Hospice Innovation, a consortium of nonprofit providers across the country that promotes best practices in the industry. “Seeking profit can drive innovation, but there are organizations that show profit margins of 30% when the average margin for a nonprofit is 2%. That means something’s happening that shouldn’t be happening.”

Mr. Koutsoumpas takes pride in having ensured that his mother could die peacefully at home in 2009, but he was alarmed by the quality of her care in her final years, which involved far too many trips to the ER, among other hassles: “I call it the pre-hospice period. You’re elderly, you’re not going to get better, but her care was so fragmented, so costly and so disruptive that it was painful.”

The experience moved him to create the Coalition to Transform Advanced Care (C-TAC) in 2010 with Bill Novelli, a former CEO of AARP. “We now have 175 national organizations working together to create better models of care,” he says. Various pilots are in place across the country to offer more home-based palliative care and services to people suffering from various chronic conditions. Capital Caring Health, for example, now offers primary care to elderly patients at home. “To me, that’s the future,” he says.

Death can be a “frightening subject,” Mr. Koutsoumpas allows. But he wishes more people would think seriously about how they want to spend their final days: “If you want to be in your own home, in your own room, surrounded by loved ones with your dog and your cat, you have to have these conversations.”

Full article, E Borrow, Wall Street Journal, 2023.5.6