NEARLY TWO DECADES have passed since her mother died, but Ramona Rhodes, a geriatrician and health care researcher, still wonders if hospice and other end-of-life care would have eased her mom’s final weeks.
Rhodes’ mother struggled with pain and breathing difficulties in the intensive care unit of a small-town Arkansas hospital before her death in 1999 at age 49. Despite undergoing several years of treatment after her initial diagnosis of stage III breast cancer, Rhodes’ mother never discussed what she wanted to happen if the treatments stopped working.
“I suspect that my mother knew that her prognosis was poor, and she just didn’t want to talk about it,” Rhodes says.
End-of-life discussions are never easy, but research indicates that patients’ racial and ethnic backgrounds influence whether they choose hospice and other end-of-life measures. According to Medicare data from 2015, nearly 51 percent of white Medicare patients enrolled in hospice care prior to their deaths, compared to 38.3 percent of African-Americans, 35.4 percent of Asian-Americans and 41.9 percent of Hispanics. Choosing hospice care, which focuses on easing pain, controlling nausea and providing other comfort measures rather than attempting to treat the disease, is a highly personal decision regardless of background. But there is a growing awareness that more needs to be done to address factors, such as mistrust of the medical profession or spiritual beliefs, that prevent or stall end-of-life discussions between members of racial and ethnic minorities and their health care providers.
Rhodes, an African-American who was a medical student when her mother died, says personal experience spurred her to want to help African-Americans and other minorities plan better for their final days. Today, she studies end-of-life health disparities at the University of Texas Southwestern Medical Center in Dallas and is one of a community of researchers and clinicians exploring how to promote end-of-life discussions among people of different races and ethnicities. Approaches range from creating videos to launching outreach and educational programs through churches, barber shops and beauty salons. Rhodes also is participating in a multisite research study comparing the effectiveness of two end-of-life planning tools. The $5.8 million study, led by Kimberly S. Johnson, a geriatrician at Duke University School of Medicine in Durham, North Carolina, is seeking to enroll a total of 800 white and African-American adults with metastatic cancer and other advanced chronic diseases living in the southern United States.
Meanwhile, Rhodes is studying the effectiveness of a 25-minute video she developed with colleagues featuring African-American health care providers and ministers; the wife of one of the ministers died of cancer. In the video, they reflect on decisions that need to be made during a loved one’s final days, as well as how end-of-life care might fit in with spiritual beliefs. Rhodes is tracking how many viewers of the video later complete advance care paperwork and hopes that its explanations will resonate with African-American patients getting outpatient care for late-stage cancers at Parkland Hospital in Dallas.
In the summer of 2017, Sheila Long met with a research assistant in a private room at Parkland to watch the video and answer questions about it. The 59-year-old Dallas resident, who has three grown children and worked for years as a short-order cook, has undergone surgery, chemotherapy and radiation since a stage III malignancy was diagnosed in one breast in 2011. Two years later, the disease was found in the other breast.
Long says she appreciated that the video discussed the role of religious faith. “I really don’t think I could go through what I’m going through without having a spiritual background,” says Long, who prays before every treatment. “What I know to do is to pray about everything and be hopeful and prayerful for the best.”
Disparities and Their Underpinnings
The history of relationships between minority patients and the medical profession includes incidents like the notorious Tuskegee syphilis study, in which African-American men were monitored but not treated for decades as their syphilis progressed, even after penicillin’s effectiveness in treating the condition was discovered. In addition, Justin Sanders, a palliative care physician at the Dana-Farber/Brigham and Women’s Cancer Center in Boston, notes that more recent and personal experiences can foster mistrust.
Sanders helped conduct a 2016 focus group with African-American church members living near Charleston, South Carolina, to assess a particular conversational approach to advance care planning discussions. He was shocked by what some of the participants described as their typical interactions with doctors and other clinicians. “The standard of communication to which many African-American patients are accustomed is appalling,” he says.
Among the stories they recounted: very brief interactions with clinicians, a perception by obese patients that they were treated differently, and a feeling among many focus group members that they were being blamed for their medical conditions. For instance, Sanders says, a patient would seek out a doctor’s help with a medical issue, “and the doctor would say, ‘Why didn’t you come to me earlier? You shouldn’t have been sitting on this for so long.’”
Doubts among nonwhite patients about the quality of hospice care appear to be grounded in reality, according to a study published in the July 2017 Health Affairs. Researchers looked at one year of survey feedback from nearly 300,000 caregivers of patients who had died in nearly 2,500 hospices around the U.S. They found that, compared with their white counterparts, black and Hispanic patients were more likely to be cared for in hospices rated as lower quality, according to federal quality data.
There also can be a nagging fear among some African-American patients that even discussing end-of-life options or choosing hospice might somehow hasten their deaths or fly in the face of God’s will, says Marisette Hasan, a hospice nurse and chief executive officer of the Carolinas Center, a nonprofit trade organization for hospice and palliative care groups in North Carolina and South Carolina.
Family members will sometimes say, “‘We’re believing that God is going to heal her, so we don’t want her to get on hospice,’” Hasan says. “So my response would be, ‘God is big, and taking hospice won’t keep him from healing your loved one, if that’s the plan.’”
For individuals with strong religious faith, previous experience with not having their loved ones’ spiritual beliefs and desires respected during their final days can erode trust, making them more reluctant to consider hospice again, says Sandra Sanchez-Reilly, a geriatrician and palliative care physician at the University of Texas Health Science Center at San Antonio who studies end-of-life issues in Latinos. “So they’re going to say, ‘My aunt went to hospice. We asked for the priest, the priest never came, and she went to hell. And now I don’t want hospice because of what happened to my aunt.’”
Cultural norms also can influence how families approach end-of-life decisions. One consideration for Latino patients, Sanchez-Reilly says, is the belief that families should take care of their own. The introduction of a hospice nurse who family members fear could take charge of their loved one’s care could be jarring. Moreover, designating one individual to take the lead in making health care decisions can be unsettling in families accustomed to reaching consensus as a group, she says.
Even patients who are prepared to stop treatment and focus on comfort measures might hold off if they feel loved ones aren’t ready for that step. “I got the sense of that with my own mother. I could tell that she was tired of fighting [the cancer],” Rhodes says. “But she continued to do so at my own urging. And it’s certainly something that I have carried with me.”
Physicians offer advice to patients and their loved ones on communicating about end-of-life care.
With a little extra effort and early planning, patients and their loved ones can help ensure that cultural and spiritual preferences are respected during the final months of life, says Sandra Sanchez-Reilly, a geriatrician and palliative care physician at the University of Texas Health Science Center at San Antonio.
To that end, patients should carefully consider who is the best fit to serve as their medical proxy, someone who can step in and make health care decisions if the patient is unable to do so, Sanchez-Reilly says. This is not always an easy choice, particularly in extended families, she says. Sanchez-Reilly advises patients whose primary language is not English to consider other factors besides English-language proficiency when choosing who will represent them in discussions with health care providers. A bilingual grandson could help translate, but does he understand his grandmother’s health care goals and is he comfortable interacting with clinicians?
Patients should not shy away from expressing their religious faith to clinicians, including how it’s relevant to their end-of-life care, Sanchez-Reilly says. For example, she explains, including the family’s pastor as a part of the caregiving team can give comfort to the patient and support the family as they make decisions.
In situations where patients fear that signing a document, such as a living will, could jeopardize their medical care, they shouldn’t mince words with their health care team, says Maisha Robinson, a neuro-palliative care physician at the Mayo Clinic in Jacksonville, Florida. “They should tell the physician, ‘I am concerned that I may receive substandard or subpar care if I complete this document.’”
Still, Robinson and Sanchez-Reilly reiterate that it’s always the clinicians’ responsibility to remain alert and ask open-ended questions if they sense patient resistance or worries about end-of-life care.
“The onus is on the clinicians to go deeper,” and to ask, ‘Is there something that makes you hesitant about completing these [documents],’ or else we may never know,” Robinson says.
Earlier Interventions
The video that Rhodes and her colleagues developed stresses the importance of planning ahead, including compiling advance care planning documents and talking to loved ones about their preferences in the event that difficult health care decisions, such as placing the patient on a ventilator, arise later. The video also explains do-not-resuscitate orders and other terms, as well as major differences between hospice and palliative care. (Unlike patients receiving hospice care, patients receiving palliative care can get disease-targeting treatments along with measures to reduce pain, nausea and other quality-of-life symptoms.)
Half of the 60 African-American patients who will be enrolled in Rhodes’ study will be selected randomly to view the video, while the other half will receive a brochure conveying the same information. Individuals in both groups will be surveyed several times subsequently to see if their perceptions of end-of-life care shift over time and to track whether they fill out the advance care planning documents they’re given, says Amarachi Agada, who assists with the research and sits with patients while they watch the video.
To encourage more caregivers of terminally ill Latino patients to accept outside help, Sanchez-Reilly has worked with colleagues to create a video that incorporates elements of a telenovela, or Spanish-language soap opera. The video, available in English and Spanish, depicts the stress that falls on caregivers when someone is ill, and it describes services available to them, from support groups to palliative and hospice care.
One challenge in connecting with patients from racial and ethnic minorities is that many hospice workers are white, says Hasan of the Carolinas Center. Hospices are trying to increase the diversity of their personnel and their patients, says Johnson, who is leading the multisite study comparing two educational tools and their impact on advance care planning in 800 seriously ill adults.
Results of a survey of hospices in North Carolina and South Carolina that Johnson helped lead, published in 2016 in the Journal of Palliative Medicine, revealed that more than 80 percent of hospice administrators and clinicians expressed at least some concern about the low proportion of African-Americans in the patient population served by the hospices. They also reported efforts to recruit African-American clinical staff, particularly registered nurses.
Even after African-American patients begin hospice care, however, there are signs that it might not be the best approach for some, according to a 2008 study looking at the rate at which whites and African-Americans withdrew from hospice. Among African-Americans, 4.5 percent chose to leave hospice and return to treatment, compared with 2.5 percent of whites. Why this occurs is not clear, Johnson says, but she hypothesizes that a more flexible model of care might work better for African-American patients “because then people don’t have to choose” between hospice and active treatment. As an example, she describes a Medicare demonstration project called the Care Choices Model that allows patients in participating hospices to continue active treatment if that is their preference.
Long, the breast cancer patient who watched the video at Parkland Hospital in Dallas, says watching it helped her to better understand how hospice and palliative care differ. She recalls looking over the advance care planning documents that Agada gave her, but she has set them aside for now.
“I told [Agada] that I was feeling really well right now,” she says. “I told her that since I was feeling good, I would talk about things with people when the time came.”
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