By Lois Thomson
Diane Deese has had a heart for hospice care for diverse and underserved communities since she began her career in hospice more than 25 years ago. Deese is the vice president of community affairs for VITAS Healthcare, the nation’s leading provider of end-of-life care and a valuable community partner in Miami for 45 years. She said the company has been dedicated to improving access to quality hospice care in underserved communities for more than two decades.
In her position, Deese works to educate both clinicians and the community about benefits, accessibility, and access to end-of-life care and palliative care services. “I work internally with our leadership and teams throughout the country, helping and supporting them as they continue to build their community access, awareness, and presence.”
Deese said that VITAS has particularly been working with medical organizations, like the National Black Nurses Association (NBNA) and the National Medical Association (NMA), that focus on wanting to do better for underserved communities. She said VITAS has been partnering with NBNA for 20 years and with NMA for more than 22 years. A notable outcome of the collaboration between VITAS and NMA is the creation of a toolkit facilitating better communication to help bridge the gap between medical and spiritual communities to support patients facing end-of-life challenges.
In 2003, VITAS was asked to speak at one of NBNA’s national conferences, sparking a partnership that endures today. “We were so amazed at their commitment that we have been working with them ever since.” This partnership led to the NBNA’s 2017 endorsement of an end-of-life care resolution, emphasizing the importance of clinicians understanding and promoting the benefits of hospice care.
In 2020, NBNA established a national end-of-life committee, highlighting the significant progress achieved during VITAS’ 20-year partnership. “Together, we’ve made great strides toward enhancing end-of-life care for underserved communities and promoting a more compassionate and inclusive healthcare approach.”
Deese explained why reaching out to underserved communities and communities of color is so important: “People of color have equal or higher incidents of all hospice-appropriate illnesses, but in hospice benefit utilization, the numbers are disproportionate.” Deese said that of the 1.7 million people who receive hospice care in the United States, less than 10 percent are African American, Hispanics less than 8 percent, and Asians less than 5 percent. Clearly there is much to do to support all communities to improve access to hospice care.
Deese said early in her hospice career, she was approached by what is now the National Hospice and Palliative Care Organization (NHPCO), and they had a diversity committee that tried to understand why underserved communities or communities of color weren’t accessing hospice more. Through much study and research at the time, they designated three areas where they believed hospice providers could make a difference: (1) educate underserved communities about the benefits of hospice care; (2) improve diversity among the people in leadership positions; and (3) encourage clinicians, including physicians and nurses, to be more involved in hospice care for their patients. “Since we understood those findings, VITAS has been working at this for more than two decades. We knew that’s where we really needed to focus our efforts.”
She pointed out, however, that the work is for more than just patients of color, saying no matter a person’s ZIP code or economic status, whether they are veterans, regardless of their gender or religion, everyone should have and receive the same care. “No patient should be turned away. Patients should be able to access the care when they need it the most.”
One factor that is so important in this, according to Deese, is education. “It’s empowerment. If you’re educated about any type of services available to you, imagine how much more of an informed decision you can make.” Deese revealed that a family experience played a large role in her career choice to work in hospice care. “We had a family member who should have gotten hospice care, but it was never offered to us; we didn’t know anything about it, and I saw what it put my family through, both physically and emotionally.”
She said when she started her career in hospice care, her goal was to hopefully be able to make a difference for one family. However, that has changed. “The goal now is all families. At VITAS, we want all families to be able to receive the care and help they need at the appropriate time, the care that can make a difference.”
