Help with Hospice: Alejandro’s Family’s Story

Navigating end-of-life care is challenging for many families, but a CMS program provides extra support

Published May 22, 2024

At 95, Alejandro Casiano was a fixture at family gatherings and source of beloved recipes in his Brooklyn, New York community. 

Then, he was diagnosed with stomach cancer. Casiano and his family opted to forgo surgery or invasive treatment, given his advanced age. But they also did not want to send him to a hospice facility, his granddaughter, Marisol Ramos said. 

Casiano and his family were able to find the right support thanks to the Medicare Advantage Value-Based Insurance Design (VBID) Model, a pilot program through the Centers for Medicare and Medicaid Services’ Innovation Center.

The pilot program includes options such as concurrent care, curatively aimed care alongside hospice, and additional layers of in-home respite care to relieve the burden of caregivers, as part of hospice supplemental benefits. 

Part of helping patients to remain at home during end-of-life means addressing pain, breathing problems, and other issues that commonly result in trips to the emergency department, said Kytra Black, the Clinical Care Manager at VNS Health in Manhattan who worked with Casiano’s family to allow him to receive the necessary care to keep him comfortable at home.

“A lot of our patients are going to the hospital for the same symptoms,” Black said. Those with lung cancer or heart failure will go to the emergency department for shortness of breath or other issues, but then want to return home rather than transition to a residential hospice facility, she said. 

“We want to reduce hospitalizations, and we want to reduce these symptoms.”

Some Medicare Advantage plans that participate in the Hospice Component of the VBID pilot program provide additional hospice supplemental benefits to make remaining at home more comfortable, allowing people to stay with their chosen Medicare Advantage plan, as well as in-home respite care that aims to reduce caregiver strain and even offers home and bathroom modifications when necessary. 

“You’re never really prepared,” she said. “You anticipate what it’s going to be like, but when you’re going through it, it’s an emotional experience.” 

Plans participating in the pilot program, for instance, provide additional respite care options. A nurse to visit Casiano’s home weekly, check his blood pressure and breathing, and provide any necessary medical supplies or medications.

“We can help them with what to expect. We put that plan in place,” Black said.

Casiano’s family said the added help provided as part of the VBID pilot program eased caregiver strain. The regular at-home visits helped supplement the family’s care. “It’s hard sometimes,” Ramos said. “We’re a big family, we’re very loving and caring.” 

Ramos said her grandfather worked as a chef at the Brooklyn Navy Yard, but that he also loved to cook for his family. “I remember loving certain dishes, but it’s not something he can do now,” she said. 

Black, Casiano’s clinical care manager, whose background is in social work, said that navigating end-of-life care can be especially difficult, in addition to the emotions that arise, family dynamics and other potential strains. 

“You’re never really prepared,” she said. “You anticipate what it’s going to be like, but when you’re going through it, it’s an emotional experience.”