Mrs. J. was in the advanced stages of congestive heart failure, and her condition was worsening. Although it was clear she didn't have long to live, her son was adamant: He did not want hospice care for his mother.
Looking for a way to bridge the divide, the clinicians at Mrs. J's nursing home called on Michelle Drayton, community outreach director for the Visiting Nurse Service of New York's Hospice and Palliative Care division, to meet with the son and discuss what hospice services were available to his mother and to him, and what they really involved.
"The son told me that he didn't want to 'give up' on his mother, and that if he accepted hospice services he felt he would be doing just that, by abandoning medical treatment for her condition," recalls Michelle. As the director of VNSNY's Hospice Outreach Program Effort, or HOPE, she's heard this--and other misperceptions about hospice--many times before. Patiently, Michelle explained to him that patients like his mother are eligible, as part of their Medicare benefits, for a full suite of services designed to improve their quality of life in their final months. His mother's hospice care team would include nurses, social workers, spiritual care advisors and, crucially, the patient's own doctors. What's more, these services could be delivered at home or in a nursing home.
"We talked about how hospice would enhance Mrs. J's quality of life, by reducing her pain and increasing her comfort," says Michelle. "The more we spoke, the more her son's resistance to the concept of hospice relaxed." Following their conversation, he agreed to enroll his mother in hospice. Within just a few days of starting hospice care, his mother's comfort had greatly improved--and so had his own peace of mind.
Changing the Equation
Project HOPE, the outreach effort that Michelle runs, is working with community residents and care providers in the Harlem neighborhood of upper Manhattan in New York City, striving to overcome myths about hospice like the ones harbored by Mrs. J's son. While hospice utilization in the U.S. is on the increase overall (more than 1.6 to 1.7 million Americans received hospice services in 2014, according to the National Hospice and Palliative Care Organization) New York State's rate of hospice use remains the third-lowest in the country, ahead of only Alaska and North Dakota.
Minorities have also been disproportionately reluctant to seek out hospice care at the end of life, with African American and Hispanic patients accounting for about seven percent and six percent of the nation's hospice population, respectively. The numbers for Native Americans and Asian Americans are lower still. The reasons for this are varied, and often have to do with cultural taboos and misperceptions around end-of-life care. Other groups--for example, veterans--have also been slow to embrace hospice care.
To overcome these barriers and make hospice care more accessible, VNSNY and other hospice providers have been joining with local organizations to carry out a range of initiatives tailored to the needs of the communities we serve. In Harlem, through the HOPE model, we're working collaboratively with Harlem Hospital and a number of nursing homes to seamlessly connect patients and families with hospice care where, when and how it will benefit them most. This approach includes training physicians and other healthcare workers on the best ways to introduce the hospice option into a patient's treatment plan, and connecting hospice nurses directly with patients and families earlier in the end-of-life process.
Myth vs. Reality
Michelle's Project HOPE team is also partnering with faith leaders in Harlem to dispel problematic myths about end-of-life care, such as the idea that hospice cannot coexist with faith. Another common misperception she encounters is that "hospice" is a physical place--namely, a place where no one wants to go.
"I thought hospice meant you were placed in a facility to basically die," says Harlem resident Cassandra Thomas. Believing that, she naturally didn't consider hospice for her 94-year-old father, Cornelius, even though he was in and out of the hospital struggling with a heart condition. Our teams explain to people that hospice is a model of care rather than a facility, and that hospice patients continue to be treated by their own doctors and specialists. We're also careful to point out that hospice services are covered by Medicare as well as most private insurance plans.
Once the Thomas family learned that hospice meant a team of nurses, social workers and other dedicated hospice workers would come to Cornelius's apartment and support the family in caring for him, they embraced the idea. Cornelius was quickly enrolled in home hospice, and his quality of life improved immediately.
Another misperception Michelle often hears, both from family members and clinicians, is that it is too early in a patient's trajectory to start talking about hospice--but we know from experience that it's much more difficult to begin the conversation once a patient or family is in crisis. While many people have an image of hospice patients as elderly and bedbound, they may in fact be up and about, writing on a regular basis, listening to the music they love, taking daily walks to the park, or--as one of our patients in her seventies recently did--traveling out of state to visit family. The earlier in the process we can introduce the conversation about hospice, the more educated and informed patients and families will be when it is time to make the transition.
Another myth that we often hear, in the Harlem community and in other neighborhoods where faith plays a large role, is that accepting hospice means interfering with God's plan. "People think that it goes against their faith, because only God knows when it is time," Michelle says. "We'll explain that we're not interfering with God's plan for your life. Instead, we want to work with you on what your desires are for the end of your life, and help you meet those goals."
"Giving up and giving in are two different things," agrees Jo-An Owings, pastor at Mount Zion AME Church in Harlem, who collaborates with the HOPE program to bridge the worlds of faith and care. "Sometimes God says, 'You just need to give in to the process that is going on. But you're not giving up on me.'"
Helping Veterans Access Hospice Care
As I noted earlier, America's military veterans are another group that historically has under-utilized hospice care. The need to overcome this barrier has never been greater--in the U.S., military veterans currently account for one in four deaths each year. Yet the culture can be resistant to accepting hospice services, whether it's the Marine determined to fend for himself, or the longtime general used to giving the orders.
At VNSNY, we recognize the need to meet these honorable former service members where they are emotionally. As part of this effort, we recently launched a veterans hospice program that has been awarded a Level Four Partner designation by the We Honor Veterans organization. This program makes certain that all of our hospice patients who have served in combat are recognized and honored for their service, and that they are fully aware of the hospice benefits available to them through the Veterans Administration. Where we can, we also employ veterans as part of our hospice teams. "There is a culture in common for all vets--we speak the same language," says Joseph Vitti, a military veteran who serves as director of our veterans hospice program.
A Positive Shift
As a result of initiatives like these, I'm happy to report that we are starting to see a shift in many of these communities, as education, collaboration, and better access to hospice care begin to replace the old myths, fear and barriers. At my agency, VNSNY Hospice and Palliative Care, a recent tally showed that well over 1,000 New Yorkers were enrolled in our hospice services at one point this year--the highest number we've ever had. This benchmark reflects both the valuable benefits of hospice care, and also the progress our city and our nation are making in helping to advance quality of life at the end of life for all of our residents and their families.