Study shows disparities in perceptions of pain

Blacks endure more pain without proper care

African-Americans endure pain without effective treatment. Another study about how palliative care fails minorities was recently released, adding to what seems like mounting evidence that hospice and others involved in end-of-life care are failing to meet the needs of African-Americans, including understanding the cultural factors that play a role in patients’ perception of pain.

According to a study presented at the annual meeting of the American Pain Society in April, African-Americans may be disproportionately missing out on effective treatment for chronic pain — from arthritis to backaches — that affects their quality of life.

The newest research on pain differences between blacks and whites suggest that African-Americans have greater barriers to pain care, some of it created by patients themselves. For example, black women are much more likely than white women to have severe pain and related mental health effects when they finally seek treatment from pain specialists.

"Overall, African-Americans with chronic pain have significantly more symptoms than whites when they first seek pain treatment, as well as more pain, depression, and impairment in their physical, emotional, and social health," says lead researcher Carmen Green, MD, an anesthesiologist and assistant professor at the University of Michigan Health System’s department of anesthesiology and a pain specialist at the U of M’s Multidisciplinary Pain Center. "This has tremendous implications for their quality of life and overall health."

While researchers say effective treatment is lacking, they could not identify the reasons why blacks and whites perceive and handle pain differently. They suspect, however, that factors such as economics and cultural differences play a significant role. The researchers have additional studies under way to further explore the impact of chronic pain on racial and ethnic minorities.

Green and her colleagues studied African-American and Caucasian men and women who were seen at the University of Michigan pain center for chronic pain in recent years. Using standardized survey questionnaires, 3,132 white women and 345 black women were asked about their pain, emotional health, and disability level.

Green’s study reflects what has become an all-too-common conclusion about African-Americans and their access to quality pain management, palliative care, and hospice.

Experts like Richard Payne, MD, chief of the Pain and Palliative Care Service in the department of neurology at Memorial Sloan-Kettering Cancer Center in New York City, have described similar barriers. But getting appropriate care is often difficult for African-Americans because disparities occur well before patients reach the end of their lives. Mistrust of the health care system has been nurtured by historical landmarks such as the 1930s Tuskegee study, in which black men with syphilis were denied penicillin, as well as by personal experiences and perceptions.

For example, African-Americans disproportionately lack health insurance. So when elderly dying African-Americans are told that hospice care is covered under Medicare, they are wary of the benefit after a lifetime of being denied coverage for other medical conditions.

"We need to help them get past these things," says Carla Alexander, medical director and vice president for medical leadership at the National Hospice and Palliative Care Organization in Alexandria, VA.

Hospices must become sensitive to the cultural issues that pose barriers and educate African-Americans by enlisting leaders within the community and a staff that reflects diversity to deliver the message.

"African-Americans mistrust the system," says Alexander. "Because of that, someone has to convince them that it is not always in their best interest to pursue intensive measures."

Bridging the gap between good and bad end-of-life care will require both education and understanding from all those involved in the dying process — insurers, physicians, patients, and their families.

Experts suggest a three-pronged approach to equalizing access and quality of care:

  • Educate professionals on how to provide good palliative care.
  • Provide an environment that is hospitable to palliative care.
  • Help the community understand what palliative care is.

In past issues of Hospice Management Advisor, experts in improving end-of-life care for African-Americans advised hospices to address the following issues in order to successfully reach African-Americans:

  • Make your hospice a model of the community.
  • Show respect for the cultural heritage and leadership of the community.
  • Address unique spiritual needs.
  • Take advantage of strong community ties.
  • Enlist the help of those within the community.

A reflection of the community

Like all other businesses, hospices have an obligation to ensure that those treating the community are a fair representation of the community itself. If the community is 20% African-Americans, then staff should include 20% African-Americans. Caring about diversity in an organization is a big first step toward showing that the interests of minorities in a community are important.

But that is only the beginning. Hospices cannot simply rely upon sending their own representatives, such as a nurse or social worker, into a community to provide hospice education. Even though a hospice is sensitive to a community’s need to see someone of similar racial background, that gesture doesn’t go far enough. The barrier of mistrust is still not broken because there remains a belief that that person is acting on behalf of the organization he or she represents, not in the best interest of community members. For that reason, public awareness programs in African-American communities have limited value.

But those same kinds of programs done in conjunction with community leaders, such as ministers and civic leaders, have a greater impact. Further, hospices must be willing to listen more than they talk.

Spiritual care is a good example. While hospices are generally open to providing a wide variety of spiritual care through their own spiritual counseling, African-Americans have a rich spiritual heritage that is deeply rooted in community worship.

Many African-Americans resent the hospice notion that an outside organization can come into a community and provide spiritual care. Still, addressing African-American communities’ spiritual needs should be a priority. It’s just that hospices have to address African-Americans’ spiritual needs in a more roundabout way, such as creating a network of local ministers and other religious leaders who will provide the bulk of spiritual care. African-Americans are more likely to listen to their own minister than a hospice chaplain because the church has always been the cornerstone of the African-American community.

As hospices become more open to suggestions from those they are trying to serve, they will gain a greater understanding of the challenges African-Americans face when confronted with a terminal illness. The differences in their approach to dealing with death and caregiving will then become clear.

Understanding family dynamics

For example, the way African-American families care for their dying loved ones differs from the way white family members do. One study found the following:

  • African-American females accounted for 86% of that group’s caregivers, while 74% of white females were caregivers.
  • African-American men accounted for 14% of that group’s caregivers, while 26% of white men were caregivers.
  • African-American daughters accounted for 42% of that population’s primary caregivers, while white daughters made up 27% of caregivers.
  • African-American patients relied twice as much on secondary family caregivers for assistance. Specifically, 58% relied on secondary helpers for assistance with intimate care tasks (e.g., bathing), 71% relied on secondary helpers for mobility care tasks (e.g., walking), and 62% relied on secondary helpers for assistance with housework tasks (e.g., cooking, cleaning).

For hospices, findings such as these could mean the following:

  • Families should be informed and counseled on the availability of services to assist with care in their communities.
  • Health care professionals should monitor patient and family caregiver need for services throughout the illness trajectory.
  • Community groups and agencies should focus on supplying support to African-American female caregivers (particularly daughters), as a much larger percentage of women provide care in African-American families than in Caucasian families.