African American Perspectives on Pain and Palliative Care

Abstract | Commentary

Everybody wants to go to heaven, but nobody wants to die. It’s not so much the act of dying itself, but the things that are surrounding death: injustice, poverty, mistreatment and evil...” There’s a sense that we won’t be stopped by those things—our ‘somehow theology.’ Some how, some way, we will get through this.

—Rev. Frank Jackson
Faith Presbyterian Church

Introduction

A cartoon from New Yorker magazine shows the figure of the Grim Reaper with his infamous sickle in hand, standing at the door of an African American man saying, “You’ll be happy to know that race played no part in this decision!” If only this were true! Although death rates for all Americans have been falling over the past century, there is still a persistent gap; blacks still die at faster rates than whites. In 2003, the death rate for African Americans was 30% higher than whites {{Hayert DL, 2006 #20431} Hayert DL et al., 2006}. 1  Higher mortality rates for African Americans compared to whites are caused by many factors, chief among which are racially and socioeconomically based disparities in access to health care and disparate outcomes of health care {IOM report, 2003}. 2  A recent analysis of mortality data in the United States concluded that if deaths rates between blacks and whites were equalized during the ten years from 1990-2000, nearly 900,000 African American lives would have been saved .{Woolf SH et al, 2004}.

It should not be surprising to note that the impact of these dismaying facts is to shape attitudes about death and dying in African American communities and to influence decision-making of dying individuals and their families.

The quotation by Rev. Jackson above, eloquently states the circumstances and dilemmas faced by African American individuals and communities when confronting the realties of death and dying. It captures the sense of struggle and triumph that has so characterized the African American experience in the United States and how this ethos is reflected in views about death and dying. This paper reviews in more detail information about attitudes toward death, dying and end-of-life care in African American communities. The discussion is informed by our clinical experiences as well as a review of the recent literature. We also describe recent attempts to overcome barriers and improve care by highlighting innovative community-based programs involving faith communities and medical centers, and hospice and palliative care programs.

African American Attitudes About Death and Dying

Weep not, weep not,
She is not dead;
She’s resting in the bosom of Jesus.
Heart-broken husband—weep no more;
Grief-stricken son—weep no more;
Left-lonesome daughter—weep no more
She’s only just gone home.
—James Weldon Johnson

Go Down Death {James Weldon Johnson, 1927} 4 

* * *

“So now they are trying to get us comfortable with dying?”
—Dick Gregory

Studies of knowledge and attitudes about end-of-life care among African Americans

The two quotations describe the contrast and spectrum of thought in African American communities when discussing and experiencing death. Our Christian religious heritage, captured by the James Weldon Johnson spiritual, emphasizes an aspect of death as “welcomed friend,” carrying one away from the burdens and unfairness of this earthly life, to meet the resurrected Christ in heaven. On the other hand, as Dick Gregory extorts, why should African Americans embrace a philosophy of life or health care—affirmed by most hospice programs—which stresses the need to be more accepting and comfortable with dying, thereby seeming to concede to the unfairness of racism, social and health inequalities, and premature deaths in our communities? The tension between death as a welcomed friend bringing the decedent to their spiritual home, and death as a struggle to be overcome, just as other examples of injustice and inequality must be overcome, is an ever-present dynamic influencing African American attitudes and decisions about death and dying {Crawley L and Payne R et al, JAMA, 2000}.

Other narratives exemplify this tension {Payne, Washington Post Editorial, 2000}.6  An elderly African American man with advanced prostate cancer was asked about his wishes for future care. During the course of the interview, he was asked about cardiac resuscitation status and if he was interested in a referral to hospice. He replied, “Do you ask all your patients these things?” In other words, he was concerned that his doctor wanted to make the hospice referral and forgo cardiac resuscitation because he was somehow not entitled to the so-called first class care of continued hospitalization and full cardiac code status that others—particularly younger, white patients—would get.

The context of understanding hospice care or end-of-life decision making for this elderly African American man reinforced his concerns that the motives of the health care professionals and institutions might not be pure; in fact, he assumed them to be based on his perceived marginalized status.

Similar themes emerged in conversations with African American pastors about potential collaborations with a major cancer center and their churches to facilitate advance care discussions and to disseminate information about hospice and palliative care to their congregations. The pastors were concerned that the motives of the cancer center could not be accepted at face value because of a past record of discrimination and mistreatment against African Americans. Furthermore, they questioned why they should prioritize end-of-life care when their congregations still did not have full access to state-of-the-art cancer treatments, and the medical center seemed uninterested or incapable of recruiting significant numbers of African American physicians to their staff. {Payne, Washington Post Editorial, 2000}.

These stories are supported by more formal studies and observations of African American attitudes toward the completion of living wills, appointment of health care surrogates and utilization of hospice services. For example, in a study of cancer patients, by McKinley and colleagues, it was observed that black patients desired “more life sustaining treatments” and “were less likely to want to complete a living will at some time in the future” than white patients from similar socioeconomic backgrounds. {McKinley ED et al, 1996}. 8  Of note, blacks and whites were equally likely to express trust in the medical system and in the action of their physicians, a result which was unanticipated by the investigators.

However, in this study, blacks were at least twice as likely to endorse the belief that “living wills increase a sense of hopelessness” and “decrease the quality of medical care.” These findings suggest a relatively greater influence of spiritual concerns in African American patients than in Caucasians, which will be discussed in more detail below.

Hopp and Duffy also studied differences in advance planning attitudes between blacks and whites {Hopp FP, et al, JAGS, 2000}. 9  Like the McKinley et al study, they found that whites were significantly more likely than blacks to complete a living will, to designate a durable power of attorney for health care, and to discuss treatment preferences before death, even when similar socioeconomic groups were compared. Also similar to the McKinley findings, they noted that blacks as compared to whites were more likely to desire “all care possible in order to prolong life.” However it is important to note that these investigators also cautioned about overgeneralization, noting that many African Americans in their study did participate in advance care planning activities and did ultimately make decisions to limit treatment at life’s end. As recommended by them, it is clear that palliative and end-of-life care services for African Americans should be infused with cultural sensitivity, and advance care planning discussions should be part of a larger communication strategy to understand preferences at the end of life in the context of these cultural concerns.

In 2002, The American Association of Retired Persons (AARP), North Carolina division, conducted an End-of-Life Care Survey, in collaboration with the Carolinas Centers for Hospice and End-of-Life Care.

This survey evaluated more than 3500 people, 11% (382 individuals) of whom were African American {Straw G, Cummins R, AARP study, 2003}. 10 The issues which emerged as most important for African Americans are abstracted and listed in Table 1.

Table 1
Most Important Concerns of African Americans at End-of-life Care*

Category

Findings

Talking and Thinking About Death

  • 76% of African Americans “somewhat comfortable” talking about death; most likely to attend funerals or memorials of friends and relatives
  • Only 50% have talked with family about wishes for end-of-life care; 20% have talked to no one; twice as likely as whites to have spoken to no one about end-of-life wishes
  • Only 8% have talked with clergy and only 5% have talked with doctors

End-of-life Concerns

  • 75% said that “total physical dependency” would be worse than death”; about 60% say that not being able to communicate their wishes or living with great pain is “worse than death”
  • About 50% fear dying painfully; 40% fear dying from long illness (but less likely than whites to fear dying painfully, from long illness, in an institution, or alone)
  • 64% concerned that they will be a burden

Pain Management

  • 80% said they would only take pain medicine when pain is severe; 66% would take the lowest amount possible and save doses for later if pain became worse
  • 50% fear becoming addicted to pain medicines (more likely to fear this than whites)

End-of-life Needs

At least 80% of African Americans rated the following as very important in dealing with their own dying

  • Being at peace spiritually (93%)*
  • Not be a burden (86%)
  • Knowing medicine was available (85%)
  • Honest answers from doctors (85%)
  • Having things settled with family (84%)
  • Being physically comfortable (83%)
  • Understanding treatment options (83%)
  • Being free from pain (80%)

*African Americans more likely to list this as their #1 need, compared to whites, and more than 90% of African Americans rated themselves as somewhat spiritual/religious, compared to 83% of whites

Advance Care Planning

  • 66% of African Americans did not want to be on life support machines, but only 30% had an advanced directive to indicate this*

*This compared to 58% of whites with advance directive in North Carolina

Hospice Services

  • 80% of African Americans said they heard of hospice, but only 15% knew Medicare pays for it.
  • Almost 60% of African Americans who knew about hospice said they would want hospice support when dying

*Adapted from Straw et al. AARP End of Life Report, 2003 26

The most important conclusions of the North Carolina AARP study concerning African American attitudes about end of life are that although 75% of those responding to the survey said they were comfortable talking about death, only about 30% had expressed their end-of-life concerns either formally or informally, and 20% had not talked to anyone. This occurred despite 93% of the African Americans who responded identified themselves as being spiritual or religious, and despite two-thirds of respondents saying that they did not want to be on “life support machines.” The study’s findings are consistent with other reports and suggest that, among other things, building on the importance of spiritual concerns is an important element of end-of-life planning for African Americans.

Another recent study reported on the results of focus groups of African Americans and Hispanic-Americans concerning end-of-life care {Born et al, J Palliative Med, 2004}. 11  There was great similarity among the two ethnic groups and several common themes emerged. There was a preference for family-provided care as long as caretaker burden was not excessive. Spirituality was viewed as a primary means of coping and as part of a holistic concept of care and well being of patient and family.

Generally spiritual concerns at the end-of-life center on the following points:

  • To make meaning of the experience
  • To receive recognition of the value of their lives
  • To have companionship
  • To die appropriately—safely, comfortably, and in a familiar setting
  • To be given hope for a way to cope through the experience.

Many patients express their spiritual concerns through their religious beliefs, but spirituality is not synonymous with religion. A recent study reported on the spiritual beliefs and practices in African American families in detail {Johnson et al, 2005}. 12  These investigators reviewed more than 500 literature citations spanning from 1966 through 2003 and reported on details of 27 studies bearing on views of spirituality and illness, and 13 additional studies which evaluated African American views of spirituality and treatment preferences. The results are summarized in Table 2.

Table 2
Spiritual Issues in EOL Care for African Americans

Spiritual Beliefs-General

  • Spiritual beliefs and practices are source of comfort, coping and support
    (n=19 studies)
  • Spiritual beliefs are most effective way to influence healing (n=6 studies)
  • God is ultimately responsible for physical and spiritual health (n=6 studies)
  • The doctor is God’s instrument (n=3 studies)

 

Spiritual Beliefs-Related to End-of-life Concerns

  • Only God has power to decide life and death (n=6 studies)
  • Belief in divine intervention and miracles (n=4 studies)
  • Religious prohibitions against euthanasia, PAS, limiting life-sustaining treatments and advance directives (n=10 studies)
  • Spiritual beliefs and practices are important source of comfort, coping, guidance and healing (n=2 studies)

*Adapted from Johnson KS, et al. The Influence of Spiritual Beliefs and Practices on the Treatment Preferences of African Americans. JAGS 2005;53:711-719.

These general beliefs expressed in Table 2 strongly influence end-of-life decision making for some African Americans and must be understood by clinicians caring for them if true collaborative management decisions are to be made.

It is important to understand whether cultural preferences of African American physicians influence their counseling of patients and management decisions for their patients during end of life. Although there are no studies which answer these questions directly, Mebane and colleagues studied the influence of physician race, age and gender on attitudes concerning end-of-life decision making {Mebane E et al, 1999}.13 

These investigators mailed a survey to more than 500 physicians (157 black, 280 white) and obtained a 28 per cent response rate. White and black physicians differed considerably on the definitions of heroic care and the appropriateness of physician-assisted suicide as an option for end-of-life care. For example, 58 per cent of white physicians saw “tube-feeding of terminally ill patients as heroic, but only 28 per cent of black physicians agreed, and black physicians were more than six times more likely than white physicians to request cardiopulmonary resuscitation and mechanical ventilation for themselves when in a persistent vegetative state. With respect to physician-assisted suicide, white physicians were more than twice as likely as black physicians to request aid in dying when “hopelessly” brain damaged.

The Mebane study supports the previously noted differences in black-white attitudes toward end-of-life care and suggests that these variations in cultural values and treatment preferences should be taken into account as medical educational programs, palliative care curricula and clinical practice guidelines are developed for end-of-life care.

In fact, the authors have been involved in the development of a palliative care curriculum that targets clinicians serving African American communities. Called APPEAL® (A Progressive Palliative Care Educational Curriculum for the Care of African Americans at Life’s End), this program has eight modules which focus on explaining and teaching many of the points raised in this paper through interactive teaching strategies, role plays and didactic presentations designed for a multidisciplinary audience of health care providers {See description of APPEAL curriculum}. 14  There is a specific module on spiritual assessment and interventions for African American patients and another module which details fundamentals of hospice care (see below). The curriculum has been taught to more than 200 clinicians in the past two years.

Hospice utilization by African Americans

Palliative care is a model of holistic medical care, which highlights the importance of the prevention and relief of suffering in seriously ill and dying patients, and accentuates the connection of the patient and family as a focus of care. Hospice is the most complete service delivery model of palliative care applied to dying patients and their families. Although hospice and palliative care teams typically have chaplains as members and include spiritual assessments and interventions in their management repertoire, these aspects of care are often peripheral to the medical treatments offered. One might predict that the knowledge, attitudes and opinions of African Americans described above would be reflected in views of hospice care and actual rates of hospice utilization, and indeed, there are correlations.

The consistent findings relating to relatively low rates of discussing end-of-life concerns, completion of advance directives, and the underscoring of the value of the spiritual dimension of care, all predict that hospice utilization rates in African Americans might be lower than in whites. In fact, as reported by the National Hospice and Palliative Care Organization (NHPCO), in 2004, African Americans represented fewer than 10 per cent of the nearly 1 million Americans who utilized hospice care {NHPCO Fast Facts, 2004}.15  This is a much lower than expected rate of hospice utilization because African Americans represent more than 13% of the total population and have higher mortality rates than whites.

Several recent studies have investigated hospice usage by African Americans and other minority groups in the United States. One study evaluated hospice usage in 23,000 deceased individuals using death certificates and interviews with relatives (the 1993 National Mortality Followback Survey, NMFS), and found an inverse proportional relationship between hospice use and African American race/ethnicity and that was “independent of income and access to health care.” It also showed, however, that cancer diagnosis and the completion of a living will increased the chances that African Americans would utilize hospice. {Greiner KA et al, 2003}. 16  Using similar methodology to the NMFS, another study evaluated more than 1500 deaths in which 111 decedents were African American and asked families of non-hospice users if hospice had been offered as an option. {Rhodes et al, J Pall Med, 2006}. 17  These investigators found that 68 per cent of the African Americans had not used hospice services, and of these, more than half had not been informed about the availability of hospice.

In fact, only a few (12 individuals, or 8.9 per cent) refused hospice even though informed. This suggests that strategies to improve awareness of hospice services may have great benefit in increasing African American access to this type of care.

Trust and Breech of Trust

Several studies have commented on the potential importance of mistrust in the health care system as a barrier to more complete utilization of advance directives and hospice usage. The hypothesis of the McKinley study cited earlier was that the black-white differences in completion of advance directives could be accounted for by higher levels of “mistrust” exhibited by African Americans patients. However they were surprised to learn that black and white cancer patients were equally trusting of their physicians and the medical system {McKinley, 1996}. 18 

In fact, ethicists and clinicians have commented that the concept of “trust” may have different connotations, and this may account for the unexpected answers reveled in these studies {Mechanic D et al, 2000}. 19  For example, one can speak of dispositional vs. situational concepts of trust. Dispositional trust refers to a culturally based attribute of individuals or a population with exists a priori to any medical encounter. This is the sense in which the concept of trust and mistrust is typically used when statements such as the following are expressed: “the lack of trust and suspicion about the health care system is a significant influence in shaping the attitudes of the African Americans with whom we spoke {Hauser et al, 1997},” 20  or “Among African Americans, the reasons for [not] completing formal advance directives ... may involve issues such as distrust of the medical profession... {Murphy et al, 1996}.” 21 

Conceptualizing the attitudes of African Americans as emanating from a sense of dispositional mistrust mischaracterizes the situation and runs the risk of further alienation by cultivating a posture of “blaming the victim.”

On the other hand, one can think of trust as an “iterative process, built over time through experiences,” which is the foundation of the meaning of situational trust. This conceptualization acknowledges that patients, families and communities make conclusions about their physicians and the health care system by evaluating their behaviors against their expectations and from their historical understanding to make value judgments about the trustworthiness of people and institutions.

The differences in conceptualization of these two meanings of trust have important clinical implications for end-of-life care. Dispositional mistrust implies that African American patients and families should simply change their attitudes about end-of-life care. Embracing the concept of situational mistrust demands that health care providers behave in ways that engender confidence that they and the health system that they represent will, in fact, behave in the best interests of the patients and families.

For example, better end-of-life care for African Americans starts by exploring concerns about discrimination and marginalization within the health care system and acknowledges the evils of past medical racism and the persistence of health care disparities that lead to premature dying. It is in this context that more honest communication can occur and truly collaborative end-of-life decisions can be made.

Strategies for the Way Forward to Improve End-of-life Care

You may write me down in history
With your bitter, twisted lies,
You may trod me in the very dirt
But still, like dust, I’ll rise
....................
Out of the huts of history’s shame
I rise
Up from a past that’s rooted in pain
I rise.

—Maya Angelou Still I Rise
{Maya Angelou, 1978} 22 

Maya Angelou’s poem movingly captures the African American heritage of struggle and triumph. We have discussed the sources of tension surrounding end-of-life care in African Americans. There are also many positive developments resulting from innovative and creative thinking and hard work represented by demonstration projects and other programs aimed at providing culturally sensitive and high-quality palliative and hospice care. Strategies for addressing better end-of-life care in African American communities include:

  • the development of specific access and diversity programs in hospices to increase the number of African American patients served
  • collaborations with faith communities to enhance spiritual caring and assist in capturing earlier referrals for hospice and palliative care
  • the development of community-oriented hospice and palliative care programs that provide medical and non-medical support for dying patients and their families and which support earlier, non-crises referrals for end-of-life care

Programs resulting from these general strategies are described below.

Access and diversity initiatives in hospice and palliative care programs

The National Hospice and Palliative Care Organization (NHPCO) recently launched an Access and Diversity Council, with a goal of providing resources to the more than 4,000 hospices in the United States to increase referrals for all underserved populations, including African Americans. NHPCO has developed an Access and Diversity Toolkit, which provides information and guidance to enhance cultural awareness of diverse populations by hospice providers. In addition, many hospice programs have developed their own access and diversity initiatives, resourced with staff charged with enhancing culturally competent care by developing in-house training manuals and community outreach programs.

The Balm of Gilead program in Birmingham, Alabama, is an example of a palliative care program which serves a predominately African American population {Kvale E et al, J Palliative Medicine, 2004}. 23  This program derives its name from an African American spiritual and was funded by a Robert Wood Johnson Foundation Promoting Excellence in End of Life Care Award. The Balm in Gilead end-of-life program was designed as an inpatient service to overcome the barriers of providing care to Birmingham’s medically underserved for whom outpatient and home-based models of care were inadequate.

Patients are admitted to the palliative care unit at Cooper Green Hospital who had been hospitalized for more than seven days with a terminal diagnosis and who had medical conditions likely to cause death within a short period of time.

Homelessness, lack of family support or caregivers and inadequate financial resources were contributing factors in the care of most of the patients. Two-thirds of the patients served were African American and more than 50% were Medicaid recipients. An important feature of this program included the prominence of spiritual and community support, including an Adapt-a-Room program in which local church congregations (half of which were African American) and civic organizations furnished inpatient rooms, visited patients and hosted social events at the palliative care unit. Evaluation of the program indicated a very high degree of satisfaction with care, and patients recorded high scores on the “transcendence/spiritual” domain of the Missoula VITAS scale despite being very ill and debilitated. The Balm of Gilead program serves as a model inpatient palliative and end-of-life care program for poor African American populations. Unfortunately the program could not be sustained by local government and community resources when the grant period ended.

Faith-community collaborations in end-of-life care

Recall that more than 90% of the African Americans who responded in the North Carolina-AARP survey self-identified themselves as “very spiritual or religious” {Straw, 2003}. 24  As noted above, a major component of the success of the Balm of Gilead program related to its inclusion of African American churches and the emphasis on the spiritual dimension of end-of-life caring. Other programs have also focused on the important role of faith communities in improving end-of-life care for African Americans.

For example, the Institute on Care at the End of Life at Duke Divinity School offers regional community-based conferences called Crossing over Jordan ©  . These conferences provide local education for communities connecting faith institutions (especially black churches) with hospices and other community resources to provide end-of-life care. Following a community readiness assessment, a day-long conference is organized in which national experts in African American end-of-life matters join with community speakers to provide educational talks and workshops. The program is evaluated, in part, on the success of sustaining enduring networks and partnerships between hospice and palliative care groups and faith institutions.

Recently the Duke Institute on Care at the End of Life partnered with VITAS Healthcare Corporation, the largest for-profit hospice in the United States and Samuel D. Proctor, a network of African American pastors focused on social justice and health ministries in their congregations. This partnership has produced a covenant of care at the end of life, which is reproduced in Appendix I. This covenant emphasizes the scriptural basis of caring and counseling of church members in end-of-life matters and acknowledges the need to work for improved access to all forms of health care, while attending to the end-of-life needs of their congregations. One potential outcome of this collaboration is a program to enlist members in several hundred congregations to train as spiritual care volunteers in hospices throughout the nation.

Community-oriented palliative and end-of-life care

The Harlem Palliative Care Network (HPCN) and the Harlem Community Hospice represent the intersection of churches and community organizations with hospice and palliative care programs focusing on the needs of African Americans and other underserved minorities in New York City. The Harlem Palliative Care Network (HPCN) was established in 2002 as a result of a partnership between North General Hospital, The Visiting Nurse Service of New York, and Memorial Sloan-Kettering Cancer Center {Canning et al, 2005}. 25  The basic idea of this program was to establish a grassroots network of service providers to interface with the palliative care program at the North General Hospital, which serves the Harlem community.

Physicians, pharmacists, home care agencies, social advocacy and welfare groups, and nursing homes were partnered in an informal relationship to identify patients and families with five medical conditions—end stage renal disease, metastatic or advanced cancer, chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF), and end-stage renal disease—and provide complementary services or social support for the families with these conditions. Core staff of the HPCN consisted initially of a social worker and an advanced practice nurse, who worked in collaboration with the inpatient palliative care team at North General Hospital, and provided comprehensive assessments of patients and families referred to the program. These assessments included the spiritual, social, pain and symptom management and physical condition of the patient and resulted in the formulation of a comprehensive end-of-life care plan.

In the course of the three-year program, 230 patients were referred to HPCN. Fifty-seven percent of the patients were less than 65 years of age, and 75 per cent were African American. This young age distribution, similar to that experienced in the Balm of Gilead program, reflects the excess mortality of these medical conditions in the African American community.

In the first year of the program, 25 of the of first 79 patients were enrolled for more than 6 months, attesting to the success in referring and maintaining patients with terminal prognosis for length of stays that were much longer than conventional hospice programs. Basic evaluation of HPCN included measures of pain relief, assessment of the location of death and the degree to which advance care planning was accomplished. Patients referred to HPCN did achieve satisfactory pain control, since 58 per cent of patients enrolled in the program for 120 days reported pain scores of 4 or less, on a 0-10 numerical rating scale. Most patients preferred to die at home, but this was achieved in only 16 of the first 64 deaths.

The most common reasons precluding the option to die at home were the absence of a caregiver or the lack of a suitable home environment. In fact, 18 of the first 64 deaths in HPCN involved individuals who had no caregiver. Advance care planning was done with each patient on admission to the program and included life reviews, discussions of the need for proxy decision makers or a durable power of attorney, review of resuscitation status, guardianship issues and funeral planning. Of the first 111 patients, 19 designated a health care proxy, 6 identified a durable power of attorney, 18 executed a living will, and 4 patients signed outpatient DNR orders.

Following conclusion of the grant support for HPCN, North General Hospital administrators negotiated with a New York City hospice provider to license 14 beds and established the Harlem Community Hospice as the first comprehensive inpatient hospice unit for the Harlem community. This is the legacy of HPCN. (See Figure 1 below)

Figure 1
Harlem Community Hospice

The Harlem Community Hospice is a 14-bed inpatient unit, located on the 7th floor of North General Hospital. The beds are licensed by the Jacob Perlow Hospice Program of the Beth Israel Hospital in New York City. Dr. Stacie Pinderhughes (pictured) is an African American board certified palliative medicine physician and geriatrician. The hospice unit serves a predominately African American, Afro Caribbean and Latino population living in East Harlem.

A corollary program to HPCN involved was established to provide sustainable support for dying patients and their families within local churches in Harlem. This program was called the Palliative Training and Education Program (PTEP), and involved the training of 130 pastors and senior lay people to do bereavement ministries and support groups in their congregations and to more effectively advocate for their church members when they were in medical settings.

PTEP involved the teaching of a curriculum that covered topics such as the origin and effects of health disparities; grief and bereavement fundamentals; advance care planning concepts; basic issues in pain management and other common symptoms of terminal illness; the fundamentals of good communication skills; the physical processes associated with dying; the “how tos” of a hospital visit; establishing a memorial service; and creating bereavement support groups in their churches, mosques or parishes.

The curriculum was taught in 3-hour blocks, twice a week for 12 weeks. More than 30 percent of PTEP trainees had a high school education or less, and 80 per cent were African American. The trainees pledged to develop ministries in their churches to support terminally ill patients and to do grief and bereavement care for families. In this way the programs were able to sustain a core of “foot soldiers” to support patients and families needing end-of-life care in their communities.

Summary

Major challenges face African American individuals and communities in the quest to provide high-quality caring at the end of life. The tension caused by confrontation with social injustice and racially based health disparities producing premature death can be tempered with a focus on meeting the human needs of people who are suffering, regardless of the cause or external circumstances.

Studies consistently find that African Americans are generally reluctant to execute advance care documents given the lack of trustworthiness of the health care system in the past, but when offered opportunities to plan appropriately and participate in end-of-life programs that respect cultural values and the spiritual dimensions of care, African Americans will actively take part. Future studies and initiatives should focus on implementation of concepts and programs such exemplified in the Balm of Gilead project and the Harlem Palliative Care Network which have demonstrated that effective intersection of comprehensive palliative care plans and cooperation of faith communities can result in the gift of dying well.

Appendix I

Covenant of Care at the End of Life

For I am persuaded that neither death, nor life ... shall be able to separate us from the love of God, which is in Christ Jesus our Lord... — Romans 8:38-39

Whereas,
We are the image of God and every life has infinite worth

Whereas,
Each life has purpose and meaning

Whereas,
Care at the End of Life recognizes the continuing personhood of those who are in transition despite the sorrow that the end of life can bring, we hold fast to the assurance of the joy of Jesus.

And,

Whereas,
Persons of African descent have higher death rates and shorter life expectancies than other ethnic groups:

Wherefore seeing we also are compassed about with so great a cloud of witnesses ...
—Hebrews 12:1a

Therefore, we covenant with one another to support and honor our dying by:

  • Recognizing our mortality and practicing ministries of presence and action that overcomes the alienation of death which threatens to separate us from body, community and God.
  • Advocating for justice and access in healthcare and delivery.
  • Modeling the compassionate and caring spirit of Jesus Christ.
  • Challenging our faith communities to foster greater awareness around death and dying and quality end of life care such as hospice and palliative care to address the continuing disparities of health care outcomes for African Americans which have a negative impact on the well-being of our communities.

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