Hannabelle W. was 92 years old when she was told she needed heart surgery. The operation wouldn't cure her, however, and her subsequent treatments would have involved hospitalizations and significant discomfort. After Hannabelle and her family considered the options available to her, she chose to enter hospice care instead. "Going with hospice made a world of difference," says Hannabelle's niece, Hannah. "It allowed her to be in her home so that we could surround her with love. Her community was around her, her church family was with her. Hospice was an extension of our family, helping us give 'Aunt Belle' comfort and the medical treatment she needed in surroundings that she was familiar with and loved."
Hannabelle's story is actually more unusual than it should be: As an African American, she is part of a group that has historically underutilized the benefits of hospice care. Nationwide, nearly 83 percent of hospice patients are white. African Americans and Hispanics account for just 8.5 percent and 6 percent of the U.S. hospice population, respectively, and the numbers for Native Americans and Asian Americans are lower still. There are a number of reasons for this disparity, but the overriding one is a simple lack of awareness. Too often, potential hospice patients don't have access to accurate information about hospice and how it can enhance their final weeks and months. At the same time, there are a number of myths and stereotypes about hospice that discourage people from considering this option.
Addressing the Knowledge Gap
To help address these barriers, the Visiting Nurse Service of New York has developed a pilot program in the Harlem section of Manhattan called the Hospice Outreach Program Effort (HOPE). Launched this past summer, HOPE involves a targeted outreach to medical professionals and potential hospice patients in Harlem Hospital and the surrounding community it serves. Harlem was chosen specifically because our hospice referral rates there have been very low in the past -- representing less than 2 percent of VNSNY's overall hospice admissions.*
"The first action of HOPE was to survey these groups and find out what their attitudes toward hospice are," says Michelle Drayton, RN, MPH, the program's director. Among other things, the survey found that many people think hospice means going to a facility. "They don't realize that they can get hospice services in the comfort of their own home," Michelle notes. Many potential patients -- and physicians -- were also unaware that hospice is covered by Medicare and by most private insurance plans, and were uncertain as well about who qualifies for hospice services and what these services entail.
Learning that hospice includes comprehensive medical care, available 24/7 to manage symptoms and keep the patient comfortable at all times, as well as specialized psychological and spiritual support for patients and their families -- and that it is all paid for by insurance -- is typically an eye-opener. "Patients may receive levels of care that they may have never received before," adds Michelle. "They need to understand how the skilled medical care, the dedication, and even the love that hospice provides helps to lighten the physical and emotional burdens at the end of life."
We also found that many care providers were reluctant to bring up the hospice option with their patients, both because they lacked a calm, unhurried setting where such a conversation could unfold, and because they saw this discussion as running counter to the upbeat, supportive role they believe they are supposed to play as physicians.
Changing How We Speak About Hospice
One result of this fact-finding process is that the Project HOPE team is revising the language used to describe hospice options. "Based on our own survey as well as research data, we've realized the importance of presenting hospice care as a natural extension of a patient's course of treatment, rather than a halt in care or a surrender," Michelle reports. "When a physician or one of our hospice liaisons says to a patient, 'At this point in your illness, you need services to manage pain and help you be more comfortable -- so I'd like to refer you to a medical team that specializes in this type of care,' it opens the door to having a conversation about this option."
Under the guidance of VNSNY spiritual care counselor Bernard White, the Project HOPE lead, the pilot is also working to address community members' religious concerns around hospice services, such as the idea that God's will determines when death will occur, and that entering hospice is disrespectful of this sacred timetable. "Bernard is able to explain to people that in fact, hospice offers a way to honor your spirituality," says Michelle.
The HOPE pilot has also begun working with physicians themselves to reframe hospice as a positive step to be taken once other treatments are no longer effective, rather than an acknowledgement that "there's nothing more that can be done." This includes encouraging doctors to raise the option earlier in the patient's trajectory. While patients are eligible for hospice in their last six months of life, we've found that often at Harlem Hospital, patients weren't entering hospice until they were severely ill and had just days to live, and were therefore unable to realize the full benefits of hospice services.
Reaching Out to the Community
The HOPE pilot has now entered its next phase, in which the project team is reaching out directly to potential hospice patients and their families. As part of their efforts, Drayton and White are talking regularly to patients and physicians in Harlem Hospital and are also maintaining a high profile in the community, appearing at local health fairs, community centers and churches to share information with about the benefits and availability of hospice services. To support these outreach efforts, the pilot is planning to launch a public awareness campaign as well.
"HOPE is really about establishing a relationship with the community, so that we can get a discussion about end-of-life care started," Michelle explains. "In our traditional hospice intake process, the hospital refers a patient to one of our hospice liaisons, who takes things from there. We've realized that in certain communities this isn't enough: We need to expand our presence and bring the dialogue directly to the patients, their families and their physicians."
After just a few months, the pilot has already resulted in a five-fold increase in VNSNY Hospice* among Harlem patients. Most important of all, conversations with community residents about end-of-life care are now occurring routinely. "The conversations at first were scary," Hannah admits. "Hospice in itself is very scary. Hospice to me meant that your life would be ending very soon." Instead, as she and the rest of Hannabelle's family have found, hospice can be a time of empowerment, choice and comfort. "The word 'hospice' took on a whole new meaning for our family," says Hannah. "Hospice is end of life, but it's end of life comfortably and with so much love. We said goodbye to Aunt Belle for the last time this week, and while that makes me incredibly sad, I know she lived the best possible life she could, and hospice was a part of that blessed and wonderful life."
*based on VNSNY Hospice enrollment figures