Raising the bar on hospice care at home

How do you make compassionate, supportive end-of-life care even better? You bring it home.

Thanks to an enduring passion for excellence, groundbreaking research, and generous donor support, BJC Hospice is building on its decades of expertise and extending the compassionate care of Evelyn's House to more patients at home. An innovative program called Evelyn's House at Home is allowing patients who once would be hospitalized for intense symptom management to be able to come home to receive this complex care.

The Journey Began with Evelyn's House

The journey to create Evelyn's House at Home actually began six years ago with the opening of Evelyn's House, a now-recognizable brand of unique hospice care. Located on the campus of Barnes-Jewish West County Hospital in Creve Coeur, the ranch-style, 18,000-square foot hospice house includes 16 private suites designed to offer patients and families specialized hospice care in warm, comfortable surroundings.

Since Evelyn's House opened, the expert hospice team has cared for more than 4,000 patients and their loved ones through a holistic approach to the emotional, spiritual, and physical care of terminally ill patients. The hospice house offers access to the most innovative therapies available to relieve pain, nausea, and agitation, as well as supportive programs in music, expressive art, and pet therapies.

Evelyn's House is named in honor of Evelyn Newman, a well-known community leader and philanthropist who died in 2015. Her generous spirit inspired her family to make a special gift that, together with other donors to The Foundation for Barnes-Jewish Hospital, has given hospice care a home and opened the door to advancing the full spectrum of supportive care to improve the hospice experience for more patients and families.

Elevating the Conversation and Expanding Knowledge

In 2019, Patrick White, MD, PhD, was installed as the inaugural Stokes Family Endowed Chair in Palliative Medicine and Supportive Care, a position made possible by the generosity of Aja and Pat Stokes. Dr. White was the first leader at Evelyn's House, and is currently the chief of the division of palliative medicine.

The Stokes' gift to create Dr. White's chair was matched by a generous gift from John and Anne McDonnell. Together, these gifts launched the Supportive Care Institute and the division of palliative medicine, a collaborative effort between Washington University, BJC HealthCare, Barnes-Jewish Hospital, and The Foundation for Barnes-Jewish Hospital.

"Evelyn’s House and the Supportive Care Institute have shifted the way we approach end-of-life care and have changed the conversation around death and dying," Dr. White explains.

Dr. White and his team continue to expand hospice care knowledge and services both locally and nationally. Research conducted at Evelyn’s House led to a new national standard of care for complex nausea. BJC Hospice is now a leader in funding from the National Institutes of Health (NIH) to advance hospice research and, in turn, revolutionize end-of-life care.

Through the Supportive Care Institute, the team is conducting additional research to find better ways to identify people who would benefit from hospice care earlier in their end-of-life journeys. This is the footing for Evelyn's House at Home.

"I am grateful for the amazing support from our community leaders that has allowed us to bring leading NIH researchers to Washington University to address critical problems facing seriously ill patients in our community," Dr. White says. "We're exploring novel methods of enhancing support for caregivers, using technology to identify and support high-risk patients, and developing innovative approaches to reduce pain, nausea, and other symptoms in patients with serious illness. This progress benefits both patients at Evelyn's House and those served by Evelyn's House at Home.”

Andy Newman, the son of Evelyn Newman, has been supporting Dr. White's vision for hospice care from the beginning. He was one of the first donors to Evelyn's House when it was just an idea.

Today, Andy is equally committed to delivering the special brand of Evelyn's House care beyond its walls. His gift through the Eric P. & Evelyn E. Newman Foundation has provided pilot funding for an initiative that helps attending physicians identify patients in the hospital who are nearing the end of life but who are still able to have conversations about their care goals.

The initiative includes training for the attending physicians on how to provide personalized and compassionate counseling to high-risk patients. It also helps patients identify the benefits of hospice earlier in their end-of-life journey.

This vital part of improving hospice care goes hand in hand with Evelyn's House at Home.

Championing the Gift of Time

Andy and his wife, Peggy, continue to champion the hospice care experience and are passionate about making the Evelyn's House culture and hospice expertise available to more people.

Through the Eric P. and Evelyn E. Newman Foundation, Andy and Peggy have now made additional gifts so BJC Hospice can expand its distinctive brand of care through Evelyn's House at Home.

Andy brings the unique perspective of seeing Evelyn's House evolve from a concept on paper to a beautiful, meaningful home that has embraced thousands of families. He believes offering Evelyn's House at Home is the next logical step in providing complex, compassionate care during the precious moments of end of life. He's also encouraged that the program will allow more patients to stay at home rather than be in the hospital.

"When you see the type of hospice care so well received at Evelyn's House, naturally you want to make it available to more people," Andy says. "And the reality is that many people with complex symptoms need to be served at home. That's why Evelyn's House at Home is so important."

Dr. White agrees. "Through Evelyn's House at Home, we will be able to provide new levels of flexibility for families who have never before had the option of staying at home when their loved one requires more intense symptom management," he explains. "This program will bring a high level of support earlier in a patient's illness so they can leave the hospital and have more time at home with loved ones."

Bringing Extra Support Home

Evelyn's House at Home supports patients with complex symptoms so they can still receive care at home. It offers a higher level of support than traditional in-home hospice.

A dedicated team of continuous care nurses trained at Evelyn’s House and supported by the hospice house's clinical experts provide around-the-clock care for qualifying patients directly in their homes. This program provides acute symptom management through nursing care for at least eight hours in a 24-hour period.

Hands-on care delivered in the home will be supplemented with the latest remote monitoring technology and virtual visits. This model of care supports patients who began their hospice journeys at home as well as those who are transitioning from a hospital.

"Our team gives caregivers the extra support they need to gain confidence in caring for their loved one at home, especially those with complex needs," Dr. White says. "We will provide patients with the support they need in their homes to bridge more intense episodes of pain and manage symptoms. This means more patients can leave the ICU setting to come home with the peace and support they deserve. It's a win-win."

Andy is pleased that the high standards of care set at Evelyn's House are also at the heart of Evelyn's House at Home. The hospice team is trained at Evelyn's House.

"Dr. White and his team are passionate about making life better for patients and families going through difficult times," he says. "All of us have friends and loved ones who have experienced end of life in different ways. I've seen how powerfully important comfort, compassion, and respect are during this sensitive time. Unfortunately, patients don't always get that kind of care at end of life when they are in a hospital setting or an ICU."

The highly trained, interdisciplinary Evelyn's House at Home team provides:

• Intensive hands-on, in-home care with support from a physician and nurse practitioner who specialize in symptom management.
• One-on-one care in continuous or intermittent shifts for at least eight hours and up to 24 hours a day.
• Additional support from expressive therapists, music therapists, and other professionals.

"The extraordinary care provided at Evelyn’s House will no longer be confined by bricks and mortar," Dr. White says. "With the launch of Evelyn's House at Home, we're expanding the impact of specialized end-of-life care to more people in the comfort of their own homes so families can spend more time together."

This article originally appeared in the summer 2023 issue of Giving magazine, published by The Foundation for Barnes-Jewish Hospital. You can make a gift to support Evelyn's House at Home on the Foundation's website or learn more by contacting us at [email protected] or 314-273-7006.