Blacks in Congress focus on end-of-life care

Better care for African-Americans addressed

Like a wave that is born thousands of miles from the nearest beach, the movement to improve end-of-life care for African-Americans seems to be gathering strength as it bears down on the health care landscape.

In September, the Congressional Black Caucus (CBC) took up the mantle of improving end-of-life care for African-Americans by hosting a legislative conference dedicated to the issue. It marked the emergence of end-of-life care for African-Americans as an issue worthy of political and social discussion outside the realm of health care industry circles.

Organizations such as the Institute of Medicine, the Robert Wood Johnson Foundation, The National Institutes of Health, and the National Hospice and Palliative Care Organization have all acknowledged the disparity in palliative care between minorities and whites. Yet, the debate over what should be done has rarely carried over into mainstream society.

"This is the largest group of African-Americans I have seen talking about death and dying," says Bernice Harper, PhD, MSW, MSC.PH, medical care advisor for the Centers for Medicare & Medicaid Services (CMS) in Baltimore and a panelist at the CBC meeting.

Harper and the rest of the panel of experts in end-of-life care discussed reasons why African-Americans should be concerned with the disparity in the quality of palliative care, why barriers exist, and what should be done to level the playing field.

Questioned about whether palliative care is an important issue, given all the other disparities African-Americans face, Richard Payne, MD, chief of the pain and palliative care service at Memorial Sloan-Kettering Cancer-Center in New York, told attendees that improving palliative care is an important issue because it directly affects the quality of health care African-Americans receive from a system that it has mistrusted for decades.

He used the example of a minority woman diagnosed with metastatic cancer and HIV/AIDS whom he recently treated. This single mother of two children was cared for by her own elderly mother, who was overwhelmed by her caregiver responsibilities.

"She needs a doctor who can treat pain, knows how to treat fatigue and depression, is a good communicator, can help her communicate with her family, and can reach out to help her get the spiritual care she needs," said Payne. "These are the kinds of things that get done in palliative care, and it needs to be done in the context of treating her AIDS and treating her cancer. This is part of the other disparity issue. There are people in this country who get this good care. I think everyone should get this good care.

"There are disparities. We have to talk about getting people better access, but we also have to talk about the quality of care of the system they are accessing."

Mistrust fuels disparity

But getting the kind of care that Payne describes is often difficult for African-Americans because of disparities that 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, and by personal experiences and perceptions.

For example, African-Americans are among the largest population without health insurance. So, even 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 don’t give them health insurance, and then we tell them that when they are ready to die, We have insurance for you,’" says Henrie M. Treadwell, PhD, health program director for the W.K. Kellogg Foundation in Battle Creek, MI. "People don’t want to give their trust to a system that hasn’t had their best interest in mind."

Distrust, however is only a part of the equation that leads to disparity in end-of-life care. Barriers to good end-of-life care include lack of education among physicians, particularly in pain management; fear of addiction to pain medication by minority patients; and even faith issues, says Beny J. Primm, MD, executive director of the Addiction Research and Treatment Corp. in New York City.

The combination of all these things results in delayed access to palliative care, says Primm. "We get to the doctor a little late," he adds. "We get accustomed to a certain amount of pain. We need to get to the doctor a lot earlier."

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

Risa Lavizzo-Mourey, MD, MBA, senior vice president and director of the Health Care Group of the Robert Wood Johnson Foundation in Princeton, NJ, suggested a three-pronged approach to equalizing access and quality of care:

  • Teach professionals how to provide good palliative care.
  • Provide an environment that is hospitable to palliative care.
  • Educate the community about palliative care.

"A cultural perspective is complex," Lavizzo-Mourey says. "We know good palliative care depends on a sense of spirituality, good medicine, policy, and interaction between the health care professional. We all bring a cultural bias to those interactions. What makes care culturally sensitive is that people understood that dynamic."

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

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

Hospices should ensure that those treating the community are a fair representation of the community itself. If the community has a significant African-American population, then a significant portion of your staff should likewise be African-American. Caring about diversity in an organization is a big first step toward showing minorities in a community that their interests 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.

There may still be a belief that the hospice representative is speaking to benefit the organization he or she represents, not to serve the best interest of community members. For that reason, public awareness programs in African-American communities have limited value.

Listen more than you talk

But those same kinds of programs implemented 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 some hospices’ notion that they can come into a black community and provide spiritual care. Still, addressing African-American communities’ spiritual needs should be a priority. But hospices have to address African-Americans’ spiritual needs in a more cautious manner, creating a network of local ministers and other religious leaders who will provide the bulk of spiritual care. People are more likely to listen to their minister 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 that African-Americans face when confronted with a terminal illness. The differences in various approaches to dealing with death and caregiving will 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 whites were caregivers.
  • African-American men made up 14% of that group’s caregivers, while 26% of white men were caregivers.
  • African-American daughters made up 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 with caregiving tasks. 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 patients’ and caregivers’ 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.

Because of the heavy involvement of African-American women in providing care, design classes, support programs, and booklets specifically to meet their needs.

In the end, African-Americans and other minorities need to be educated about hospice itself. Many minorities misunderstand what hospice entails. For example, some believe that hospice is a place where the sick are sent to die, rather than a service that allows people to die at home among family and friends. In fact, upon learning what hospice is all about, many will find it to be familiar.

"People of color have been caring for their own since the beginning of time," says Harper. "They cared for the dying in their homes. Back then we didn’t call it hospice. Now we are going to care for you, provide services, and make you comfortable. Your family members are going to care for you, but we want you to have these extra services. We don’t want you wracked with pain. We want you to have all the comforts. You may have your family with you, but you need a social worker, nurse’s aide, and a physician, and we’ll provide these to you."