Working Together: Organizing the Community to Effect Change in End-of-Life Care for African Americans
Community: A group of people living in the same locality and/or having common interests.
It is the common interests of communities, whether it be education, economics, safety, or the health and well-being of a community that drives organizations, associations or faith-based groups to support and speak out for those who may not be able to speak for themselves or who often times are simply not heard—underrepresented and underserved communities, including the African American community.
These organizations and associations may offer opportunities for health care providers to develop and nurture networking relationships and partnerships to work together for the betterment of underserved communities. As with any social movement that has longevity and reach within communities of color, it has been vital to build strong bridges and partnerships with grassroots organizations, community-based coalitions and of course, the religious community. The movement to provide access to quality end-of-life care to the unserved and underserved African American communities around this country is no exception.
In this segment, we will address the lessons learned to date about working with the African American community to increase awareness of and access to end-of-life care. The authors of this manuscript will highlight three innovative and successful community-based initiatives designed to promote better care for African Americans. They are: VITAS Innovative Hospice Care, a national organization that provides direct hospice services; Trinity United Church of Christ, a large church congregation in Chicago that ultimately partnered with VITAS to begin the work of providing direct hospice care services in their congregation and community; and the Center for Practical Bioethics (formerly Midwest Bioethics Center) which is working with members of local hospital ethics committees to address end-of-life care of the communities it serves.
This paper will illustrate the type of creative partnerships and dialogues that are happening in communities of color around the important health issue of end-of-life care. While the work of these three organizations is helping to set the standards for outreach within communities of color, they by no means stand alone. With significant support from local and national foundations, more than 300 community coalitions around the country have worked to:
- Improve pain management
- Promote advance care planning
- Support palliative care education for physicians, nurses, and social workers
- Advocate for better psycho-social and spiritual support
- Increase utilization of hospice care
The Challenges of Progress
Even with the numbers of community groups working to make inroads serving people of color, hospice remains underutilized across all segments of the population. Like almost every aspect of health care access and utilization, statistics indicate a disproportionate underutilization of hospice care among minority populations. All of the authors represented here have learned that there are nuances in working in the community around issues of health and death. Before a health care provider can work in outreach to external groups in various communities, there are internal matters to consider. Because there may be complexities in caring for culturally diverse patients, it is important when caring for communities of color that there is an understanding of their cultural values and spiritual beliefs. To gain knowledge about these communities of color, there has to be a genuine interest in these communities and a willingness to engage them. There has to be an assurance that providers and organizations are truly committed to outreach efforts. For example, they may want to consider implementing the following.
- Developing a formal diversity infrastructure within the organization that will focus on these communities
- Incorporating diversity training for all staff, including management, which will focus on the beliefs and cultural traditions of the communities identified for service Once this is established, then it may be time to look at reaching out to the community. Consider:
- Researching and identifying the community groups in the area
- Establishing a trusting and mutually respectfully relationship
- Hosting focus groups regarding end-of-life care issues with local churches and various community leaders
- Identifying local leaders with good standing that will advocate for communities of color
- Developing an action plan as to how and to whom to implement outreach efforts
- Developing and building relationships with community agencies that may have particular focuses on end-of-life care
- Building ongoing and sustainable relationships within communities once they have been established.
One essential way to reach the community at large is through the support and assistance of the black church and other religious institutions or faith-based organizations. African Americans have a spiritual heritage that is deeply rooted in community worship. Given that the key to working with the churches is through their leadership, it is important to bring clergy and various community leaders together. It is imperative to work with them to form collaborative partnerships so that communities can be educated and thereby empowered to better understand and make informed decisions regarding available end-of-life care services. There is tremendous potential and opportunity to work within communities to increase awareness and utilization of hospice services and, most importantly, to help affect positive change in end-of-life care for African Americans.
AN EXEMPLARY TRIAD OF COMMUNITY ACTION
VITAS Innovative Hospice Care: A Company’s Commitment
Sharon R. Latson
Senior Director of Access Initiatives
Director of Community Affairs
Headquartered in Miami, Florida, VITAS (pronounced VEE-tahs) operates 40 hospice programs in 15 states (Arizona, California, Connecticut, Delaware, Florida, Georgia, Illinois, Kansas, Missouri, New Jersey, Ohio, Pennsylvania, Texas, Virginia, and Wisconsin) and the District of Columbia. VITAS is the largest hospice organization in the United States . The company is fully committed to improving care for the seriously ill and dying throughout the nation. VITAS has always been aware, however, that there is a huge divide between the percentages of white and non-white patients receiving hospice care. In 2004, more than 1 million people utilized hospice services, yet only 8.1 percent were African American.
Looking at those statistics and knowing what percentage of families could and should receive hospice services; VITAS set an ambitious goal to increase the overall utilization of hospice services by African Americans. To accomplish this goal, VITAS made a firm commitment to reach out to underserved populations through its community-focused Access Initiative. Since 2001, VITAS has worked tirelessly with key grassroots organizations across the country, as well as with various high-profile national organizations, to develop programs and establish relationships that will help to educate individuals, families and larger networks of people of color to the benefits and services that hospice care provides to patients and their families.
The VITAS Team
None of this happens without the commitment of individuals. VITAS first set out to build a team that would work with and within the communities it hopes to serve. The VITAS Senior Director of Access Initiatives manages and directs the VITAS Access Initiative and is responsible for the development and growth of national initiatives to expand awareness of and access to VITAS services in underserved and unserved communities of color. The Senior Director also serves as a national spokesperson for VITAS on access initiatives in both national media relations and public policy activities. A vital role of the Senior Director of Access Initiatives is to work with the VITAS communications/marketing department to develop and create culturally relevant educational presentations and resource materials that complement and reflect the diverse communities VITAS services. Finally, the Senior Director partners with all 40 of the local VITAS programs to lead strategic development of local access initiatives.
The VITAS Director of Community Affairs works closely with all VITAS programs to provide guidance, support, and continuing development and expansion of the Access Initiative. Additionally, the Director of Community Affairs works to establish and build on-going partnerships with professional organizations, community agencies, the political community and healthcare organizations within communities across the country.
In summary, the goal of the Director of Community Affairs is to provide guidance in promoting the hospice philosophy as well as to increase access to and utilization of hospice services within the African American community and other underserved communities
To access and serve diverse communities, VITAS, in several key states (Illinois, Ohio, California, Florida, and Georgia ) where a large African American population and community is established, instituted the position of community liaison. The liaison’s role and responsibility is to reach out to local churches, community organizations, political and community leaders, and community-based physicians to offer educational workshops and informational seminars. These liaisons are vested in the communities they serve, and they establish and maintain ongoing, trusted relationships within these communities.
By working together with community partners, VITAS has been able to reach out to communities in broad and sustainable ways. Some of the noteworthy successes:
- Established relationships with African American radio talk shows, which led to the airing of informational spots and discussions on end-of-life care issues with show hosts and listening audiences
- Placed feature stories and periodic informational pieces in African American publications throughout the regions VITAS serves
- Conducted memorial services at hospitals, nursing homes, in-patient hospice facilities, community centers, and churches for family members to pay homage to their deceased loved ones
- Provided ongoing hospice educational seminars and workshops at hospitals, medical centers, and nursing homes for the professional staff
- Established key and long term relationships with renowned national African American organizations and institutions
- Conducted end-of-life care seminars and workshops at national African American health care conferences
- Worked in partnership with churches to provide an array of supportive services to the ministries, which has helped bring awareness to the congregation members on matters related to end-of-life care
In addition, as a very important part of its work to increase awareness and to build partnerships, VITAS appointed a Director of Hospice Education for Rainbow/PUSH to help inspire and educate the leadership of the One Thousand Churches Connected initiative regarding the benefits of hospice care. Additionally, the Director of Hospice Education for Rainbow/PUSH is responsible for introducing the VITAS Hospice Ministry Program, which provides education on end-of-life care to the clergy and church leadership as a whole, and also provides various spiritual care volunteer initiatives to black church congregations across the country.
The Director of Hospice Education spearheaded several community-focused programs under the Access Initiative and in collaboration with the Duke Institute on Care at the End of Life. Under the hospice education directorship, the Black Church Community Assessment Tool was created to evaluate the knowledge and attitudes of church leaders and other key community leaders in the African American community with respect to end-of-life needs; the survey assesses the knowledge and attitudes of members of the African American community. The information is used to inform policy agenda and to redefine educational programs and curricula for health care professionals providing care and services to African American patients and their families.
The Samuel Dewitt Proctor annual conference brings together African American clergy leaders and lay persons to strengthen networks within the African American faith community and the capacity of its leaders to address the diverse needs of the community it serves. The conference initiates and develops collaborative partnerships that maximize the skills, assets, and models of engagement of the black church and its outreach into the communities locally, nationally and globally. The conference is also a conduit to identify and disseminate critical information between its partner churches and lay leaders locally, nationally and globally.
In 2005 the leadership of the Samuel Dewitt Proctor conference, the Access leadership team from VITAS, Duke Institute on Care at the End of Life, and the Duke Divinity Office of Black Church Studies developed the Proctor Covenant Statement on End-of-Life Care. The covenant serves as an initial pledge signed by faith leaders from across the country to support initiatives to improve end-of-life care in the black church. The Proctor Covenant Statement will be finalized at a future time as a theological statement on quality care at the end of life and will become the defining statement, standard and guide for African American clergy. One of the more significant and successful VITAS partnerships developed under the Access Initiative to date is with the Trinity United Church of Christ, which is presented in the next segment.
AMANI - The Story of One Faith-Based Initiative Rooted in the Community
Director, Amani Care Program
Trinity United Church of Christ (Trinity UCC) is a mega-church serving African Americans on the Southside of Chicago, Ill. Under the dynamic, 34-year-long leadership of the Rev. Dr. Jeremiah A. Wright, Jr., Senior Pastor, Trinity UCC has moved in the progressive mission of being an African-centered church which is “Unashamedly Black and Unapologetically Christian.” Trinity UCC is “In the heart of the community . ever seeking to win the community’s heart.”
More than 20 years ago, one very important part of Pastor Wright’s vision for Trinity UCC was that the church would provide hospice care. Earlier attempts to establish hospice care had been made but had not come to fruition. In 1998, Pastor Wright called on a group of three members to again investigate hospice for the church. That group became a task force whose efforts resulted in a three-stage growth plan for hospice ministry at Trinity UCC. The task force members were Ms. Freddye Smith, Deacon Francis Priester, and Deacon Rosalyn Priester.
Our hospice task force wondered aloud why our pastor had chosen us, since none of us were in the health care field nor knew what hospice was. We came to understand much later in the process that he had chosen us because he had seen us providing what amounted to hospice care for one of our beloved deacons before his death. Between us, we provided spiritual care; attention to and advocacy for his physical needs; connectedness to his church community, even when he became too ill to attend services; attention to his financial and legal concerns; and ministry of presence and the love, care and affection of an extended family in the absence of his own. We were to learn that these were the fundamental tenets of hospice: that no one dies in pain and that no one dies alone. We also knew that within the African American community, extended family care and nurturing has always been at the heart of who we are as a people—communal. Connecting this way of “being” to the concept of hospice and end-of-life care, however, had not been done.
As the task force became educated about the end-of-life journey and the specifics of the concept of hospice over the course of the next two years, we sought to better understand our connectedness to our African heritage around death and dying. We enlisted the assistance of the Rev. Dr. Iva E. Carruthers, a brilliant sociologist and member of Trinity UCC. Dr. Carruthers researched and consulted with a fellow theology student from Kenya who introduced us to the African concept of “Amani,” a Ki-Swahili word which means “healing, wholeness and peace (at oneness—atonement) with God.” What was most important to our understanding was that healing, wholeness, and peace is not just for the passage of death into eternal life, but the healing, wholeness, and peace is for the fullness of our life’s journey , of which death is only one chapter. Therefore, the meaning of Amani spans both life and death. It was this understanding that led Trinity UCC to rename our health corporation Amani~Trinity United Community Health Corporation, and our task force became Amani Trinity United Church of Christ Hospice Task Force.
After the Amani Trinity UCC Hospice Task Force had explored which direction to take for hospice care to become a reality at Trinity UCC, Pastor Wright determined that we would not succeed in moving forward without a staff person dedicated to this effort. In mid-2001, at Pastor Wright’s request, I joined the Trinity UCC staff, first as Coordinator of Hospice Care and later as Director of the Amani Care Program.
Culminating this first formative stage was the commencement of hospice ministry work under the title of the Amani Care Program. In 2002, we began a two-fold approach to educate the community about end-of-life care and hospice while forming and training a cadre of hospice care volunteers.
To accomplish this, we held educational forums at Trinity UCC and at other churches entitled: End-of-Life - A Sacred Journey . Members of our congregation as well as the community were invited. At these forums we featured guest presenters from various hospices in and around Chicago to answer the questions “what is hospice,” “how and when do I use it,” and “who pays for hospice care?” Most importantly, each of our forums began with a pastor setting the tone of our African history and heritage, our African-centeredness as a people of God, and our Christian beliefs about death and dying.
Since we know that we are all living in a death-denying society, it was important to “go there” in the beginning so as to open a safe space to talk about death and dying. As African Americans in this Christian body, we believe that there is eternal life after death. In our African American community of faith, a death is celebrated as a home going. That still does not, however, mean it is easy to talk about preparing for the death of a loved one or for one’s own death. These forums became a safe place for and a way of opening the conversation about death and dying, a sacred journey.
Concurrent to the hosting of educational forums, the Amani Care Program began training volunteers for hospice care. Since we were not a hospice, we went to the experts, the “full” Medicare hospices, to be trained. Thus, we benefited from the same presentation of the hospice concept as that received by those being trained to be actual hospice workers. Our plan was to expose our trainees to the full concept of hospice so that when the day came that Trinity UCC had its own program, we would not have missed a step. To date, we have trained more than 90 hospice care volunteers.
We wanted to become licensed to provide hospice care for our church and community. So we next set out to accomplish this goal. Throughout 2002-2004 we continued hosting our educational forums on end-of-life care and training volunteers. We also added educational forums on advance directives. Early on, Amani Care Program became familiar with the “Five Wishes Ò,” a living will publication of Aging with Dignity, and we ordered customized copies for our forum attendees and anyone we could interest in advance directives. We continue to provide these copies upon request from within our church and the larger community.
From our earliest days as a task force, we had heard about volunteer hospices as a category different from full (Medicare) hospices. Our first entrees into pursuing this type of hospice were, at best, discouraging. We were told that volunteer hospices were a thing of the past—that they had once existed, and were, in fact, the primary model of hospice care when it originated in this country in the 1970s but now were illegal. Then, by an act of grace, we saw an article in a hospice publication referencing volunteer hospices in various parts of the United States, and one of them—Fox Valley Hospice—was geographically close in Geneva, Ill. This hospice and their executive director and staff became our mentor. While it is true that there are now very few volunteer hospices still in existence around the country, Fox Valley Hospice stands out with a 25-year-plus history of providing hospice care. They have more than 800 volunteers and are still growing. With their mentorship and support, we worked diligently with the Illinois Department of Public Health division that licenses all hospices. We were successful in forming our advisory board, identifying and hiring the necessary staff (registered nurse, licensed clinical social worker, and spiritual/bereavement care credentialed counselor), and meeting all other requirements. We were proudly licensed as a volunteer hospice in July 2004 with the name Amani Volunteer Hospice Care Program. For the next eighteen months, we were embattled in a fight to keep the category of “volunteer hospice” as part of the Illinois regulations. In the end, our coalition of six volunteer hospices of Illinois, led by Fox Valley Hospice, was successful in our legislative efforts. However, the page was turning for the Amani Volunteer Hospice Care Program as we were moving on to stage three.
Our pastor had always desired that Trinity UCC be able to provide full hospice service. We explored that possibility and in the first quarter of 2006, we entered into a new initiative agreement with VITAS Innovative Hospice Care Ò . This joint initiative is the Trinity Amani Hospice Care Team with VITAS. We offer members of the African American community and other communities of Greater Chicago end-of-life care that is enriched with spiritual healing, wholeness, peace and dignity. These enhanced services are available through the partnership of VITAS’ provision of individualized, patient-centered, quality hospice care, combined with Trinity/Amani’s ability to enrich that care through a greater emphasis on cultural and spiritual integrity, sensitivity, and compassion. This is a brand new model of a faith-based entity partnering with a for-profit hospice to provide full hospice care. As of this writing, while the “Trinity Amani Hospice Care Team with VITAS” team is not yet fully formed, we are moving steadily in that direction. We presently have two Trinity UCC positions providing volunteer, bereavement and education/advocacy services, and the remainder of the hospice circle of care (registered nurses, certified nurse assistants, social worker, chaplain, physician, and team manager) is supplied from an existing team of VITAS’ Chicago Central Office. The goal of this initiative is for Trinity UCC to be able to provide the full range of hospice services to members of our congregation and the surrounding community, and for the VITAS Chicago Central Office to learn firsthand from an African American church how to better approach, work within, help to educate and service the African American community in the area of end-of-life care.
Trinity UCC is working faithfully in this relationship to see how we can together serve our congregants and community who either know little about hospice and/or who presently underutilize hospice services. To accomplish this will achieve our ultimate goal by putting in place the basic tenets of hospice—that no one die in pain and that no one die alone.
The Center for Practical BIOETHICS: Learning From Different Cultures
President and Chief Executive Office
Center for Practical Bioethics
Greater Kansas City is a metropolitan area of diverse racial and ethnic groups, and although “cultural diversity” has been one of the Center for Practical Bioethics (formerly Midwest Bioethics Center) organizational goals for many years, it was within the context of a three-year initiative, Pathways to Improved End-of-Life Care: A Community’s Approach , in the late 1990s, that we began working with diverse segments of our community in a strategic way. In this paper, we will describe three projects that specifically targeted African American populations among other diverse co-communities in the Kansas City metropolitan area in an effort to improve end-of-life care for all Kansas Citians:
- “Compassion Sabbath”—an initiative to provide support and training for clergy to improve spiritual care of the dying.
- “Trusting Our Differences”—an active listening project where members of our hospital ethics committee consortium learned about end-of-life experiences from African American, Latino, Vietnamese, and poor whites.
- “EPEC” (Education for Physicians on End-of-Life Care)—a training program for health care professionals caring for people of color at the end of life.
We will also share with readers what we, as a predominantly white staff, learned from our interactions with African Americans in these three projects that not only strengthened our Pathways initiative but also the overall work of the Center.
Various studies inform us that, at the end of life, having one’s spiritual needs addressed is as important as having our physical needs addressed through competent clinical care. Therefore, one of our key Pathways strategies was to engage clergy leaders in efforts to improve care of the seriously ill and dying. Knowing the role of the church in our African American community, we believed this was a critical strategy to address the needs of African Americans this important population in our community. However, as a secular, freestanding bioethics center, we were not certain how willing clergy would be to engage with us in this endeavor.
Our first step, therefore, was to invite two prominent clergy, one white and one African American, to provide leadership and credibility to this project. Both were affiliated with the Center in volunteer leadership roles. After several initial meetings, each invited a handful of close colleagues to join a steering committee to develop strategies to accomplish our goal. Eventually, using a peer-to-peer approach, a very strong diverse steering committee of more than three dozen prominent clergy developed Compassion Sabbath .
Data was collected from clergy in one-on-one interviews, focus groups and pencil and paper surveys. We engaged an outside research firm and were able to gather statistically valid information. Interestingly, across faith traditions, race, and educational variations, clergy reported that ministry to the seriously ill and dying as among their “high” to “highest” callings (nearly three-fourths). Although they indicated that they felt they were better at ministering to the seriously ill and dying than were others in their congregations clergy did not feel that they did a very good job. The reasons given for this self-proclaimed inadequacy closely mirrored those given by physicians in various studies, i.e., their seminary curriculum did not address these issues. Moreover, they were unaware of resources available to them to shore up or improve their skills.
Based on the experience of steering committee members and the data we collected, a comprehensive multi-faith initiative was developed that the group named Compassion Sabbath .
Components of this program included:
- A day-long leadership conference for clergy only.
- A resource manual that provided sample sermons, homilies, prayers, poems, songs, and religious text from a variety of religious traditions.
- A workshop for clergy and lay leaders on end-of-life care, providing information about advance care planning, pain management, conflict resolution within health systems, etc.
- A prayer breakfast.
Each clergy who attended the leadership conference was asked to make a personal commitment, including participation in Compassion Sabbath weekend. On a highly publicized designated weekend, clergy across our community who had participated in Compassion Sabbath were asked to speak from the pulpit about their duties and obligations and those of their congregation to the seriously ill and dying from their specific theological perspective.
Careful attention was given each step of the way to involve highly regarded local and national African American clergy in leadership roles. For example, we hosted Dr. Gardner C. Taylor who Ebony named one of America’s greatest preachers and who one of our co-chairs referred to as the “dean of American preachers” to lead the prayer breakfast, and Dr. Wallace S. Hartsfield, a highly revered Kansas City clergyman and former chairman of the Congress of Black Churches, to be the final speaker at the Compassion Sabbath leadership conference. The outcomes were well worth the effort.
On Compassion Sabbath weekend, more than 80,000 people in Kansas City heard their clergy talk about the importance of spiritual care of the dying. As one clergy said, “That’s as many people as saw the Chiefs play that weekend at Arrowhead Stadium.” In Kansas City, that’s a lot of people.
More importantly, we saw faith communities, including a significant number of African American congregations, take action and develop 9/ongoing efforts. The impact of this program was significant, for example:
- The percentage of faith leaders in Kansas City who thought their congregation ministered “very effectively” to the seriously ill and dying increased by 33%.
- The number of congregations who had programs or other means of teaching members how to minister to the seriously ill and dying increased by 48%.
- The median number of members involved in ministry to the seriously ill and dying in Kansas City congregations increased by 60%—from five to eight in one year.
- The percentage of faith leaders who rated the overall quality of their congregation’s ministry to the seriously ill and dying as better than the previous year increased by 50%.
Not long thereafter, we took on another project specifically attempting to understand the experiences and perceived needs of African Americans, Latinos, Vietnamese and poor whites at the end of life. We called this project Trusting Our Differences .
Trusting Our Differences
The Kansas City Area Hospital Ethics Committee Consortium celebrated its twentieth anniversary in January 2006. We believe it to be the oldest continuously functioning ethics committee network of its kind in the United States . It has also been a powerful driver of many successful Center projects, and members of the consortium were instrumental in helping our staff to develop the three-year initiative, Pathways to Improve End-of-Life Care: A Community’s Approach. Members of the consortium are chairs of ethics committees or their designees and reflect the composition of ethics committees across the United States, i.e., they are, generally speaking, not people of color. However, early in the planning of Pathways , we realized the necessity of engaging and learning from all members of our community.
Our immediate goal was to “seek to understand differences in knowledge, ideas, and attitudes among persons of diverse cultural backgrounds to improve communication regarding health care decision making at the end of life.” Our long-range goal was to elevate the importance of learning about diverse cultures in programs for improving end-of-life care by building and enhancing relationships with leaders from diverse communities in the Kansas City area. We also wanted to develop and test the effectiveness of a cultural diversity intervention targeted at ethics committee members.
We wanted to provide a forum in which to “confront the dilemma of difference,” and our hope was to “transcend the difficulties difference implies.” We wanted to persuade clinical leaders “to listen actively and ask questions that would help them learn about cultural diversity.”
To better employ the active listening model, we hosted a series of panel presentations over several months with participants from diverse ethnic, racial, and socioeconomic backgrounds. Each panelist was asked to tell one or more personal or professional stories about end-of-life care and to dialogue with consortium members about their experience. The idea was to provide a forum, literally a “safe place,” where local ethics committee leaders could engage in open, honest dialogue about issues that made them feel inept, uncomfortable, or awkward when treating patients with different cultural perspectives.
Flaws in the plan were apparent almost immediately, and significant modification was necessary. Consortium members were extremely uncomfortable because it “felt like our visitors were being objectified.” The conversations did not distinguish cultural relativism from ethical relativism, and, although some wanted to have an intellectual/analytical discussion about these theories, others thought the discussion appeared confrontational and even hostile toward our guest panelists.
Imagine the Center’s distress: some participants believed that the process was damaging the personal or professional relationships they already had with panelists and organizations they represented. In hindsight, providing a clearer rationale for participation could have mitigated these tensions but no such plan had been established. For nearly six months, Consortium members and Center staff struggled with the plan. As the divisiveness of the project increased among Consortium members, we realized that another strategy was needed. Nevertheless, the experience actually strengthened the Center’s resolve to address cultural diversity in the context of the project.
“If at first you don’t succeed, try again.” This adage, often taught to small children, became the mantra of staff working on cultural diversity; and, in 1999, we began the project anew, retaining the “active listening/learning” model, but with a smaller task force (members of the Consortium, rather than the entire group), and with clarified goals and objectives.
The methodology was also refined to take us outside the confines of the Center to places where diverse groups live and work. Volunteers from local social service organizations to were asked to develop a set of diverse end-of-life narratives and tools to facilitate active listening and ethical discourse. The narratives would then be used to develop a set of recommendations for how ethics committees can address cultural issues as a way to improve the care of seriously ill and dying people.
In the process, we hoped to learn how individuals from various cultures define “dying well” and about institutional or systems barriers that they think makes dying well either difficult or impossible to achieve. We hoped to learn how they derive their knowledge and the sources they turn to for advice and support. We also wanted to learn about variations in orientations to the self and family and willingness to talk about dying and death.
Assembling the task force took tenacity and salesmanship. Membership recruitment was much more difficult for this task force than for many others that the Center has established over the years. Many potential members said the project was too time consuming or that they did not have the “expertise” necessary to participate. We also came to realize that many long-time Center volunteers were not comfortable in the role we were asking them to assume.
These difficulties notwithstanding, we eventually assembled a task force of eleven highly-motivated volunteers, including three physicians, four nurses, a chaplain, and two social workers. Ultimately, nine people participated in the interviews as “active listeners.” Ten Center staff members including, among others, a physician/ethicist who had practiced medicine in the county, an attorney, and a social worker also participated in the program.
A nurse with formal training in ethics, agreed to manage the project. Her interpersonal and communication skills were outstanding, and she was excellent at building relationships and doing effective community outreach. Perhaps most important, she was a good listener and was willing to take on a difficult project. We knew that we needed a project manager who would be morally courageous and willing to work with many people to accomplish the goal. From the outset, we knew that we were on “terra incognito.” We were, in effect, following maps like those that guided the ancient mariners to lands unknown. As the early sailors were warned, so also were we: “You are now entering uncharted areas; ’here be dragons.’”
An advisory committee was assembled that included both local and national experts in cultural diversity. The advisory committee met once as a whole, but members of the committee consulted with staff and several contributed to publications about the project. Advisory committee members were culturally diverse, multidisciplinary, highly skilled, and professional. Its members included a physician; professors of nursing, sociology, and ethics; a Holocaust educator; and a civic leader.
A medical anthropologist was also enlisted to provide technical assistance and advice to the task force through calls, emails, and written recommendations. The task force met frequently to receive reports from the small groups and to share their experiences. We also read and discussed the literature related to cultural diversity and supported one another emotionally.
The initial assignment for taskforce members and Center staff was to identify four diverse communities on which to focus and to find partnering agencies in those communities. By size, African American and Latino communities were at the forefront of our project; our other two choices were less obvious. After much discussion, we agreed that demographically the Vietnamese, Hmong, and Lau communities were significant, and we agreed on the Hmong. We also decided, after much debate, to focus on Caucasians of low social and economic status as the fourth group. We wanted to interview people who might be especially vulnerable for reasons of their culture, ethnicity, race, or class.
We divided into four work groups, each group focusing on one community. The initial responsibility of each group was to secure a partnering agency. We began by calling on social service agencies that served individuals in the designated communities. At a snail’s pace, agreements were made, participants were identified, and a series of panels or interviews were scheduled.
For the purpose of this paper, we will focus on our experience in the African American community. It took some time to identify an African American organizational partner for this project. Even though the Center has a good relationship with Kansas City ’s Black Healthcare Coalition and has often relied on our relationship with them for similar projects, our funding placed geographic limitations on us that precluded the Coalition as a partner. Fortunately, an African American nurse on the task force made contact with a long-time nursing colleague who assisted us in forming a relationship with a large African American church. Based on her relationships, six members of the church agreed to share their stories.
Their pastor more than 25 years told about his wife, who died eight years earlier, after being diagnosed with ovarian cancer. Her cancer had spread to the lining of her stomach, aorta, and liver. From the time of her diagnosis until her death was only four weeks.
She had surgery and was in and out of the hospital frequently during that time. At her last admission, she was told that her cancer “was in her bones” and that she had only a few days to live because her “platelets were being eaten up.”
While in the dying trajectory, medical students were brought in “to drill in there to get this bone marrow.” The pastor said they had been through a lot and his wife was in pain. A medical student who attempted the procedure failed and was instructed to by the attending physician to “try again.” The pastor said, “I told him to get the best person here. Hit it. Get it. And not be experimenting. I think sometimes there’s a lot of experimentation going on. I don’t want to sound . like I am dealing with racism. I don’t know that they wouldn’t have done the same thing, but we’re not welfare recipients, we’re paying. And I want the best medical, and I’m willing to pay for it, and I don’t want anybody experimenting at that time.. So, that was a problem for me.”
Another participant, a 40-year-old African American intensive care nurse told about the unexpected death of her husband who was a paramedic. Because of a debilitating cardiac condition, he had been moved to a “desk job,” and while attending a professional conference out of town, he was found dead in his hotel room.
When she and her family went to identify his body, the morgue was closed. They were told they could not see his body that they would have to wait until they got back home to see him. She said she “tried to push it way back into the back of her mind, but the only thing they had to identify who we were was that all of us were black. So, I kept thinking that they wouldn’t do this to a white person.. Maybe if I had walked in with my nursing license?”
Along the way, it became clear that we needed to modify our agenda. We were asking about cultural or anthropological ideas regarding death and dying, but those we interviewed were more interested in describing what we began to refer to as their collisions with the health care entities. Everyone we talked to had a story about the difficulties he or she had experienced with health care providers. .
What started out to be a research project exploring cultural preferences at end of life evolved into a collection of personal stories that revealed the ineptness of providers and organizations to communicate with, and to care for, individuals who were different from them. It also revealed distrust and skepticism among African Americans about the motivation of health care professionals. Some even questioned our the Center’s intent. Unfortunately, we heard similar stories from the other designated populations. The task force members felt guilt and angst.
We had not anticipated this turn of events. Therefore, the struggle to provide a framework for these findings presented a new and more challenging task. The project director asked the program team and the task force to meet together to probe the issue face-to-face. In that meeting, each person was asked to recommend how we could best use the stories we had heard. Their suggestions varied from passionate comments like, “I just want to tell the truth” to compiling a list of recommendations for all ethics committees regarding vulnerable and diverse patients. Motivation to do something significant was high, but no clear plan had yet emerged.
As staff read and reread the reams of narratives, we recognized that we were becoming more aware of our own biases and shortcomings related to cultural, ethnic, and class issues. The act of listening had been a transformative experience for the task force members and ripples of that transformation were still being felt. Out of the ferment, a solution began to take shape. Why, we asked, couldn’t we develop a tool that would help others have a similar experience?
We chose a dozen excerpts from the narratives that seemed to have a potential for prompting self-reflection. The task force and staff reflected on these excerpts and took them to the larger group, the Kansas City Area Hospital Ethics Committee Consortium. Finally, eight excerpts were chosen as the basis for a cultural diversity tool.
The task force and program staff met again. Working in small groups, they asked introspective questions based on their reading of the narratives. These questions were subsequently revised and edited many times by Center staff with input from the participating agencies and expert advice from the advisory council. Additionally, program staff completed a list of recommendations for ethics committee members whose responsibilities included helping organizations do ethics in culturally diverse situations. These recommendations and the cultural diversity tool appeared as special supplements in an issue of Bioethics Forum .
As a finale to this project, the Bioethics Center held a summit in February 2002 to discuss cultural diversity — the discoveries that were made and their implications for our community. More than 200 thought leaders participated. Without question those who attended comprised the most diverse group of people the Center had ever convened.
The Center and its community partners remain committed to searching for new ways to hear and see who we are, collectively and individually, and how we can ease the ethical tensions in the health care experiences of persons who are especially vulnerable because of cultural, ethnic, or class distinctions.
Based on the stories we heard in the Trusting Our Difference project, we knew that health care professionals needed additional education and training to provide good care at the end-of-life and that there was a need to specifically address needs of African Americans and other people of color.
EPEC (Education for Physicians on End-of-Life Care)
The American Medical Association had developed and distributed an outstanding end-of-life care curriculum commonly referred to as EPEC (Education for Physicians on End-of-Life Care) and hosted several train-the-trainer faculty development programs. The Center took applications of local physicians and served to facilitate and coordinate EPEC trainings in Kansas City with a goal of presenting EPEC to 10% of all physicians in the metropolitan area. We achieved this goal without difficulty. However, when we took a look at who had attended these sessions, African American physicians were underrepresented.
To remedy this problem, we went to the Black Health care Coalition and asked them to partner with us to do an EPEC training specifically targeting African American health care professionals. We agreed together to identify and financially support a highly regarded African American physician and nurse to become EPEC trainers.
We also agreed that the Coalition would be responsible for recruiting African American clinicians to attend and that the Center would pay the Coalition to do recruitment. Together we agreed that we would invite Dr. Richard Payne, a nationally recognized palliative care physician then at Sloan Kettering in New York and now Director of the Institute on Care at the End of Life at Duke University’s School of Divinity, to serve as the keynote speaker.
[Ultimately, Dr. Payne served as principal investigator for a Robert Wood Johnson grant, to develop an addition to EPEC called APPEAL (A Progressive Palliative Care Educational Curriculum for the Care of African Americans at Life’s End)].
Once again, by making this commitment and investment, the Center for Practical Bioethics learned a great deal and strengthened our resolve to enrich our understanding of care of the seriously ill and dying by working with African Americans and other diverse populations.
What We Learned
- Nothing is as important in relationship building as is face to face communication. Letters of invitation are necessary but not sufficient. Finding intermediaries who are willing to “broker” relationships can be very helpful
- Commit to honest communication with all parties even when it feels risky. Learn to actively listen and to apologize when mistakes are made. Be willing to be vulnerable. The views and perceptions of others may be different than your own and sometimes are hard to hear. Don’t attempt to refute or explain away the experiences of others that are in conflict with your own.
- Make a commitment at the beginning of a new relationship between individuals or organizations to engage in reciprocal relationships that you hope will lead to genuine engagement.
- Identify and involve leaders from communities with whom you wish to work in planning the project. Good intentions can be easily misunderstood. Don’t develop a project and then try to “sell” it to others. Together, develop and agree upon clearly stated goals, strategies, and rules for participation. Be prepared to compromise and to include in the agenda a broader scope of concerns than your own.
- Even if you are a secular organization, recognize the importance of clergy in the African American community. Respect and appreciate the significance for many who are “trying to understand God’s will.”
- The majority white population in our country tends to value and primarily rely upon written communication. Understand the importance of an oral tradition. Learn to actively listen and to value story telling and narrative.
- Be tenacious. Making a commitment means sticking to it even when situations are complicated and relationships may be strained. Remember the power of saying, “I’m sorry” and “thank you.”
- Don’t go away when the project is over. Build on the relationships that have been established. Don’t imagine that your organization should always be in the lead.
Although national health policy and Medicare and Medicaid impact care that people across this country receive, health care is fundamentally a local enterprise. Providers such as physicians, nurses, pharmacists, and hospitals are licensed by state boards. Psycho-social/spiritual care is provided by families and faith communities. And the institutional policies of the local hospital, nursing home, and hospice have a direct impact on care people receive. Very few Americans ever travel more than 150 miles in their lifetime to receive care.
End-of-life care is community centered. The authors believe that death and dying happen in a social context and that our communities and the partnerships we form in those communities can significantly increase and improve care of at the end of life for African Americans.