While nearly all Americans age 65 and older are covered by Medicare, their experiences seeking and receiving health care can vary significantly.
Research shows that older Black and Latinx Medicare enrollees commonly experience racism when seeking care, report communication challenges with their providers, and have difficulty affording and accessing regular care.1 Other studies have found that patients who report discrimination are more likely to perceive their care as poor-quality.2
It’s also known that patients who feel disrespected by health care providers do not adhere as well to their treatment plan and have greater mistrust of health professionals. Conversely, patients who say their provider treats them with dignity are more likely to use preventive services.3
Making up less than 20 percent of Medicare enrollees, Black and Latinx adults tend to be underrepresented in national surveys. This has made it difficult to obtain their perspectives on the health care they receive.4 To elevate their voices and gain a better understanding of their experiences, the public opinion research firm PerryUndem, with Commonwealth Fund support, held a series of focus groups with Medicare enrollees age 65 and older between July and October 2021. The groups and their members varied by health status as well as income level. For example, members of some groups had relatively low income as well as significant health care needs, while members of other focus groups had higher income and had a mix of health needs. However, all members of each group were either Black or Latinx.
(Note that because the groups included only older Black and Latinx Medicare enrollees, we can’t speak to the experiences of enrollees of other races and ethnicities or, for that matter, younger enrollees. For focus group details, see How We Conducted This Study.)
The group discussions centered around people’s experiences seeking and accessing health care, feelings about their providers and the U.S. health care system, perceived discrimination and racism while seeking care, and thoughts about how to improve health care. Overall, participants reported having positive health care experiences when the professionals treating them were responsive to their preferences and needs, and negative experiences when encountering discrimination and bias. They also described what an ideal health care system might look like — one that respects their identities, needs, and preferences — and how we might get there.
Respect in Health Care: The Ideal and the Reality
The older Black and Latinx adults who took part in the focus groups said they want a health care system that makes space for addressing individuals’ needs and care preferences and is welcoming and accepting of people’s identities.
My primary care doctor . . . he greets me, he respects me, he’s always asking me [about my family]. So, this is a personal relationship.
Positive experiences with the health system often went hand in hand with strong relationships. Reflecting on the positive health care experiences they have had, participants emphasized the importance of interpersonal relationships between patients and members of the health care team. One Black adult said, “My primary care doctor . . . he greets me, he respects me, he’s always asking me [about my family]. So, this is a personal relationship.”
Many focus group members explained that they want providers who are willing to offer their time and attention — who care about them, as patients. They value clear communication, including having their questions answered in ways they can understand. “I have had the same PCP [for a long time], and he is wonderful,” one participant explained. “He really listens to me. He doesn’t rush me. Any concerns that I have, he takes care of them for me.”
While such positive experiences promoted trust, many members also recounted experiences that did not live up to the ideal they described.
I think a lot of it has to do with our age. I think they think old people just complain about everything.
Discrimination and bias experienced by older Black and Latinx adults were multifaceted. Many in the focus groups shared stories of discrimination and racism when seeing a provider — discrimination they perceived as based on their race, ethnic background, language, age, gender, income, or insurance coverage. Some also talked about discrimination based on their multiple identities, like being both Black and a woman.
“Everything [in the health system] is about class and your economic bracket. If you are of a lower income, then you get less [care]. And race is everything,” explained an older Black participant. Many in the focus groups said that as people of color or as people with low income, they are often given inferior care, treated brusquely, and left feeling that nobody really wants to understand their needs. Such experiences chip away at their trust in the health system.
Many cited age as a factor in their interactions with the health system overall. “I think a lot of it has to do with our age. I think they think old people just complain about everything,” said one Black participant. As the discussions revealed, this age bias, combined with other biases, leads providers to dismiss patients’ concerns and rush through appointments, never fully explaining either their health condition or the recommended treatment plan.
Older Latinx adults explained that their language and accent can affect the quality of care they receive, as well as their comfort in seeking health care services in the first place. One person said they are “not getting respect [from providers] just for speaking Spanish or because of the accent that we have.” In addition, some felt that interpretation services offered by providers are inadequate. Even when they are proficient in English, some focus group members said their provider’s office staff treated them rudely or made them wait longer for care because of what they perceived as cultural bias.
We say we’re in pain. But they might not even check it, because they assume we can tolerate pain more than other people.
Discrimination manifested as harmful assumptions and poor communication from providers. According to the older Black and Latinx focus group members, the discrimination they experienced manifested in different ways. Some focus group members said their providers make assumptions about them and their health based on stereotypes. “They assume because you’re African American your health doesn’t matter . . . that you drink, you smoke, you do this, you eat fast food, you eat that,” said one individual. Others said providers treat them as if they are ignorant about their own bodies, or providers dismiss their attempts to advocate for themselves.
People also spoke about feeling ignored. “Well, you know, a lot of times, I think [doctors] don’t listen. Sometimes they write me off,” shared one Black adult. Many participants, Black as well as Latinx, feel their providers don’t take the time to really understand their health conditions or won’t conduct further testing to get to the root of the issue.
Focus group members said feeling ignored was common when describing pain or other symptoms. “We say we’re in pain. But they might not even check it, because they assume we can tolerate pain more than other people,” said one Black adult. This experience is confirmed by previous research revealing that false beliefs about biological differences between Black and white people shape the way providers perceive and treat the pain of their Black patients.5
If you don’t trust your doctor, you won’t feel comfortable enough to say what you need.
Lack of respect impacts how older Black and Latinx adults view the health care system. According to focus group members, the negative health care experiences can compound into a sense of betrayal. “I think a lot of [Black patients] are probably skeptical and are leery, just because we know generally that we are not treated the same in hospitals, in doctors’ offices, with pharmacists, with costs of medicine,” explained one Black member. Some individuals said they do not feel comfortable speaking openly and sharing information with their providers. “You always have your guard up if it’s [a new doctor],” one Black member noted. “It’s sad that we have to do that.”
Speaking up about being treated unequally is not easy, as focus group participants explained. Some said they feared their providers could have given them worse care if they had spoken up. One person compared it to complaining to a waiter at a restaurant. “You don’t know what they are going to do to your food.”
Focus group members described how these interactions with providers could lead people to avoid getting needed care in the future, which in turn could result in worse health outcomes and a poorer quality of life. An older Latinx adult explained the risks:
Well, people remain sick, and they won’t solve their problems. Also, people won’t have the same level of trust to go and see the doctor, because they’ll be afraid that they won’t be well taken care of. At the same time, it affects us because if you don’t trust your doctor, you won’t feel comfortable enough to say what you need.
Another participant put it this way:
Discrimination leads to a [lesser] quality of life for the Hispanic community health-wise. If you are not afforded the opportunity to address a [health problem], if you don’t have health care professionals really prescribing medications or a test to find out what the problems are, you are going to have a [lower] quality of life.
Knowledge is power, and knowing what you need to ask for is a tremendous aspect in getting [the health care] you need.
The older Black and Latinx adults we spoke with feel it is up to them to ensure they receive quality care. In fact, most said that if they do not actively advocate for themselves, they simply won’t get good care. “Knowledge is power, and knowing what you need to ask for is a tremendous aspect in getting [the health care] you need,” explained a Latinx participant.
Several participants described the steps they took to inform themselves ahead of appointments, partly to advocate for their needs and preferences and partly to understand their care plan better. These included researching their symptoms, learning about possible treatments and medications, and finding out what Medicare will and will not cover. Some spoke about preparing questions to ask their providers about their conditions and treatment. Some individuals cited language barriers, a lack of clear communication from clinicians, and misinformation online as key barriers to obtaining credible health information.
Ideas for Creating a Better Health System
According to the older Black and Latinx adults who took part in the focus groups, the ideal health system is one that respects their identities, care needs, and preferences — something they feel the current system fails to do. When asked what would make their care experience better, participants offered the following ideas.
The health care workforce should resemble the people it serves. Focus group members emphasized the importance of being served by health professionals who relate to their lived experiences or share their identity. “I feel more comfortable with someone who looks like me, who can relate to me, who knows what it’s like to almost be me,” a Black member said. “There are certain things that you can’t relate to without being in that community.”
The older Black and Latinx adults we talked to felt that today’s health care workforce does not always reflect their identities. The number of physicians of color is not representative of the U.S. population, and Black and Latinx health care workers tend to more often be aides or support staff.6 Based on what participants shared, increasing diversity at all levels could help promote greater trust among patients of color.
Hold providers accountable for discrimination. Members of our focus groups believe the health care system lacks accountability for the discrimination that takes place and offers no outlet for reporting incidents. They want reports of discrimination to be taken seriously and, more important, want measures to prevent discrimination from occurring in the first place. Specifically, they suggested these steps:
Penalize providers who discriminate against patients.
Create advocates in the system to assist when there is suspected discrimination.
Ensure insurance coverage is anonymous to the treating clinician to reduce bias.
Require more training for providers on implicit bias and discrimination.
Engage communities of color in finding solutions.
Promote comprehensive care, including guidance on healthy lifestyles. The older adults we spoke to want the health system to pay more attention to factors that affect health beyond medical care. These include physical fitness, proper nutrition, access to affordable fresh food, and other drivers of health.
Improve communication by addressing language barriers and ensuring health information is accessible and trustworthy. Focus group participants want providers, insurance companies, and hospitals to provide necessary information simply and clearly. When language barriers are a problem, they want better access to interpretation services and health information offered in multiple languages. Moreover, they would like the health system to work with trusted community partners to disseminate accurate information about navigating the health system and about their rights as patients.
Older Black and Latinx adults feel that a high-performing health system is respectful: it ensures that everyone can access quality care from providers who respond to their needs and preferences and value their individual identities. Members of our focus groups described the current U.S. health system as falling well short of these expectations. Only by taking steps to ensure equity in access to care as well as quality of treatment can we hope to make strides toward the ideal health care system.
HOW WE CONDUCTED THIS STUDY
PerryUndem and the Center for Advancing Innovative Policy (CAIP) held 12 one-and-one-half-hour focus groups on Zoom with 44 Black and 44 Latinx adults age 65 and older. Participants who could not access the Zoom platform called into the groups by phone. The focus groups were conducted between July and October 2021. To be eligible to participate, participants had to be enrolled in Medicare and self-identify as Black or Latinx/Hispanic.
Moderators were matched with participants based on race and ethnicity. Three of the six focus groups with older Latinx adults were conducted in Spanish; all others were in English. Participants were placed in focus group sessions by their race or ethnicity (Black or Latinx), health status (high-need and high health care costs or not), and income (above or below $30,000). Participants were considered high-need and high-cost if they had two or more chronic conditions and one functional limitation.
Celli Horstman et al., “What an Ideal Health Care System Might Look Like: Perspectives from Older Black and Latinx Adults,” feature article, Commonwealth Fund, July 21, 2022. https://doi.org/10.26099/9kkg-kq37