The Future of Hospice Care for African Americans: Clinical, Policy & Caregiver Perspectives

In a changing world, the challenge for the health care professionals and providers in the hospice and palliative care movement is to build upon that which has successfully served our patients and families and to embrace with enthusiasm the opportunity to create innovative new programs which appropriately serve and increase access and utilization by African Americans.

Fay A. Burrs, RN, BSN
Michelle Grant Ervin, MD
Bernice Catherine Harper, MSW, MSH, PhD

Sitting three feet from the bronze and blue casket placed at the center of the church auditorium is the weathered face of a loving 65-year-old mother who is reflecting over the last six months of her second son’s life. The physicians diagnosed him with prostate cancer, but she knows that he simply lost the will to fight this battle here any longer. She knows that he is gone on to a better place of rest. Folding and unfolding the obituary of her 45-year-old son, a man who worked too hard and died too soon, she finds relief from the large host of family members and friends who have come to this place to communally mourn her loss and provide support. With a gentle smile that offers as much comfort as she receives, she nods at her next-door neighbor, who was like a second mother to her son. This valiant mother, who experienced great ambivalence when approached by the hospital social worker, reflects on her refusal to give upon her son and her fight to explore other options of treatment as recommended by the care team. Slowly wiping away the latest round of tears from her eyes, she is grateful for the team that supported her and managed the care of her son during the last two months of his too short life.1 

“African Americans have been caring for their loved ones at home since the beginning of time. It was never called home care. They have cared for their dying relatives equally as long. It was never called hospice. Relatives come home from various parts of the country to relieve the caregivers, and it was never called respite care. They come to give relief to mama, papa, sisters, brothers, aunts, uncles, cousins, grandma, and grandpa. They talk with each other, share experience, and give advice and counsel. It is never called networking. Last, but not least, they serve as volunteers in their own communities, in their own churches, and on their own streets. They wear no uniforms, record no hours and receive no awards. Nor do they expect to be rewarded. It is family caring for family, neighbors caring for neighbors and communities caring for each other.”2 

African Americans and other populations of color underutilize palliative and hospice care, even when they have access to end-of-life care services. The causes for underutilization may be many and varied. It is necessary to embark upon further scientific research to gain a complete understanding of the dimensions of this important problem.

As we look to the future of hospice and palliative care for African Americans, it is imperative to develop an effective strategy to overcome the inherent problems associated with underutilization and minimized access. A willingness to openly dialog about the intricacies associated with some of the ugly societal issues must be faced if we are to look with hope and expectancy to the future with the goal of realizing equitable working solutions for quality end-of-life care for African Americans.

Background: Review of Hospice Care in the United States

The 1983 public policy decision of Medicare to include hospice care in the Medicare program has increased the capacity of health care providers to support dying patients and their families. This grew out of a desire to provide compassionate dignified care that respects the rights of the individual to choose how they will live until they die. The number of hospice programs has increased steadily since 1983, and Medicare has become the primary payer for almost two-thirds of all hospice patients.3 

The traditional definition of palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.4  The specialty of palliative care has evolved out of the collective hospice experience and is a broader application of the concepts of hospice care. Patients who demonstrate a significant burden of illness and are identified earlier in the disease trajectory (when death is not imminent—months to years) may benefit from palliative care services. Hospice would then be the natural transition into the final months of care when no aggressive curative intervention is desired.

There are an estimated 3,300 operational hospice programs (includes primary and secondary locations for individual hospices) in the United States. Of the estimated more than one million patients served in 2004 by hospice programs, 81.2% were Caucasian, 8.1% African American, 6.2% Latino or Hispanic, and 4.6% classified as multiracial or “another race.” 5 The percentage of African Americans served was significantly less than the 13% that matches the proportion of African Americans in the United States.

Recent research and literature cites the health disparities experienced by ethnic minorities, and the reported underutilization of hospice care is consistently noted by people of color. 6 For those patients who are enrolled in hospice, 50% die at home with their loved ones, 7% in a hospice unit, 4% in a residential care setting, 7% in a free- standing inpatient facility operated by the hospice, and only 9% in a hospital setting.5 

Hospice care provides the most highly developed model of care, providing comfort, aggressive pain, symptom management, and quality-of-life care. Recent statistics show that African Americans are more likely to die in the acute care setting of a hospital, with less satisfaction regarding quality care at life’s end.

This paper will look at reasons for the underutilization of hospice and palliative care services in the African American community and suggest broad areas of policy changes that could promote this model of care as part of the spectrum of quality health care delivered to African Americans during their lifespan. These areas will be reimbursement issues that impact on access; access to care issues in general; education regarding cultural proficiency, especially regarding the issue of mistrust in the African American community; disparities in care; consumer and caregiver awareness and engagement ; and health care providers’ organizational policies and mission . These critical areas will be explored to gain an understanding of their impact on referral of African Americans to hospice and palliative care, and subsequent utilization of those services. Through appropriate engagement of these critical factors, our hope is that more African Americans will come to the realization that hospice is not resignation to death but a proven means of providing quality care at the end of life.

Determining Hospice Eligibility

In order to be eligible for this benefit, a medical doctor and the hospice medical director must certify that the patient has a terminal or life-limiting condition with a prognosis of six months or less to live. Physicians have difficulty admitting that they cannot cure a disease and difficulty identifying when their patients might be appropriate candidates for hospice.7 

The patient must sign a statement electing hospice care instead of routine Medicare Part A Hospital benefit. The ambivalent feelings evoked by this choice may cause some patients and families to have concerns over loss of coverage options. The ability to utilize inpatient services may offer significant comfort to a struggling family that is already concerned about its inability to cope with the loss of function and disease progression.

Understanding of the benefit as well as a clear expectation of the patients goals and wishes are one of the keys to assuring that a clear understanding of the services are received. Without this clarity, the patient or family may feel that it is too early to choose this option for care.

It is the responsibility of the providers, physicians, case managers, and discharge planners to discuss options of care and answer patient and family questions, without inserting their biases, in a manner that patients and families understand. A physician may recertify that a patient has six months or less to live after two initial 90-day benefit periods, followed by an unlimited number of 60-day periods. Often, patients and their families will hear “six months to live or less” and will focus on nothing else. Both health care providers and patients and families are often unaware of the extended benefit periods available indicating that the patient has lived past six months; they are also often unaware that some patients “graduate” from hospice.

When patients graduate, they improve and/or are no longer declining from their disease and are discharged from hospice. This does not mean cured, simply that the progression of their disease has reached a plateau and hospice services are not needed until progression of the disease continues. This window offers an excellent opportunity for palliative services.

Understanding the Four Levels of Hospice Care

The hospice benefit allows for four general levels of care to manage the needs of patients and families over the continuum of the illness. These services are required of every certified hospice program; however, different programs may vary in the manner in which services are offered.

  • Routine care is care that is needed on a regular basis, part time basis and is provided in the recipient’s place of residence (e.g. home or nursing facility).
  • Respite care, the second level of care, is almost always provided in an inpatient setting. This is generally limited to five consecutive days within a benefit period.
  • Continuous care accounts for less than 1% of total hospice days and is typically utilized when a patient is “actively” dying at home and needs a more intensive level of care and support and does not wish to return to a hospital or acute care setting.
  • General inpatient care, the fourth level of care, comprises about 4.3% of all hospice days. All Medicare-certified hospice programs must have the availability of inpatient care. Some hospices use contracted beds within a hospital, skilled nursing facility or long-term care facility.

Under Medicare rules, hospices cannot use more than 20% of their total days in inpatient care, although an individual patient is not restricted to this percentage. A willingness to accommodate more inpatient care within the “20% rule” is a possible policy change, which would enhance the use of hospice in the African American community. This would, hopefully, begin to address the caregiver burden in the community.

Reimbursement Issues

Access to hospice care via a third-party payer source may present a challenge regarding coverage of services. Coverage may vary from a nominal reimbursement under smaller plans, with the ability to negotiate for expanded services under larger fee sources like Blue Cross Blue Shield and Kaiser Permanente. A source sometimes overlooked is the hospice benefits of the Veterans Administration (VA). This system offers multiple options of support and can be combined with other fee sources. There are other private insurers that will allocate some days for hospice but none as expansive and realistic as Medicare or VA. Many insurance providers have some form of reimbursement for hospice care, and their guidelines may be modeled after the Medicare Conditions of Participation (COP). The Medicare Hospice Benefit utilizes the Medicare Part A (hospital insurance) for coverage of hospice services.

One area of challenge is the use of culturally insensitive language and a style and manner that does not reflect a complete understanding of the values and beliefs of the community.

When the alternative to aggressive treatment is presented in this manner, the potential beneficiary (and family) may feel unsure about making a choice for services that sound good and may be ambivalent regarding perceived loss of Medicare coverage. If this seems to occur, the beneficiary (and family) making the choice requires additional and patient counseling that fully explains the benefit options and alternatives available for treatment. The health care providers must realize that the initial delay in making a final decision for (or against) care is necessary as African Americans gain a sense of comfort with services that are not traditionally understood. This will be discussed in greater detail in the following section of determining eligibility.

After electing to use the hospice benefit, a Medicare recipient may have the following services provided by a Medicare-certified hospice:

  • Physician services for the medical direction of the patient’s care
  • Intermittent home visits by registered nurses and licensed practical nurses
  • Intermittent home health aides for services such as dressing and bathing
  • Social work and counseling services, as well as the provision of spiritual care if desired
  • Medical equipment, such as hospital beds, oxygen, etc.
  • Medical supplies such as bandages and catheters
  • Medications for symptom control and pain relief, and other medications related to the end-of-life diagnosis
  • Volunteer support to assist patients, families, and loved ones
  • Physical therapy, speech therapy, occupational therapy, and dietary support as indicated
  • Bereavement support for families after the death

No Insurance or Inadequate Insurance: the Impact of Poverty

The current statistics reveal that approximately 40% of the American population is either uninsured or underinsured. In most states, Medicaid will cover traditional aggressive treatment but not all states have a Medicaid hospice benefit at this time.

What occurs with patients who have no Medicaid reimbursement in their state or who have no health insurance? The burden of payment for each day in hospice falls on the patients and their caregivers.

Anyone who has provided end-of-life care to people of color, a disproportionate number of whom are in poverty and typically receive unequal treatment, recognizes consistent, recurring themes. The poor experience:

  • Decreased access to health care and higher death rates.
  • Increased pain and suffering.
  • Increased obstacles to obtaining health care.
  • More sacrifices in order to provide a cure such as loss of a job to take care of a dying family member.
  • Inadequate and insensitive educational outreach efforts.
  • More fatalistic approaches to end-of-life care.8 

Cultural Factors Relative to African Americans and the End of Life

Our responses to death have been evident since early recorded history. Fear has been the dominant emotion. Conscious efforts to reduce this fear have subordinated intellect to emotions; that is, explicit ideas about death have served primarily to inspire emotionally generated concepts of immortality.

Expressions of immortality themes are abundant, ranging from the crude animism of early human beings and modern aborigines to the sophisticated and carefully reasoned theologies that are an important part of the modern cultural fabric.

The problems of how death affects human motivation and integration at the individual level have been discussed by Freud, who cited aggression, guilt, incorporation, and identification with the dead love “object.”

The fundamental needs of dying persons and their families appear to be universal. The only differences are how societies and groups within societies go about meeting these needs, which impacts services and determines the quality of care. Caregiving should enhance the dignity and self- respect of the dying, their families, the caregivers themselves, and hospice workers as well. Caring for individuals throughout the spectrum of illness, in general, is a challenge for health care professionals. Caring throughout the spectrum of illness until life’s end for patients and families of different races, cultures, creeds, national origins, social and economic classes, and religious denominations and spiritual beliefs is the greatest challenge of all for the health care professionals. Why? Because this is the dying individual’s last chance to experience love, deep caring and compassion, as well as the health care professional’s last opportunity to provide sensitive, professional and culturally competent care for the individual. This should not only involve the terminally ill but their families and significant others as well.

Today, health care professionals can make the difference between success and failure in caring for African Americans and their families at life’s end. Health care professionals must be selected and trained on the basis of their ability to care for patients and families. The attitudes of the health care professionals as they formulate caregiving modalities and strategies will be crucial in the care of African Americans at life’s end.

Defining and Understanding Culture

Culture can be defined as an integrated pattern of human behavior, which includes but is not limited to thought, communication, languages, beliefs, values, practices, customs, courtesies, rituals, manner of interacting, roles, relationships, and expected behaviors of a racial, ethnic, religious, social, or political group; the ability to transmit the above to succeeding generations is dynamic in nature.9 

Culture provides people with a design for living and interpreting their community, environment and world. It provides human beings with both identity and a framework for understanding experience. The recent trend and focus of engaging diverse populations has been aimed at developing an awareness of cultural diversity. Many professionals and organizations believe that one avenue to gain an awareness is to develop cultural competency. Culture is one resource that cannot be ignored in this process of building on the strengths of communities.10  Developing cultural competency enhances the providers’ abilities to establish trusting relationships with the population and community being served.

The knowledge of cultural differences and sensitivities that professionals should possess as they deal with different cultural norms or caregiving responsibilities is complex in one sense yet not so complex in others. The complexity is related to the fact that cultural differences do not operate in a vacuum just as patients and their families do not exist in isolation.

They exist within a dynamic, independent, yet interdependent health care system, involving localities, communities, states, and nations. Our global world is made of thousands of languages and dialects that have cultural dimensions and cultural connotations.2 

When interacting with the African American population, there is an unconscious tendency to see the color of the skin and make assumptions about the culture and experiences. Often overlooked is the fact that all Americans with a darker hue may not identify their roots as being from Africa. If the health care provider makes assumptions about a particular ethnicity and culture without taking the time to gain a more complete understanding of who the patient is, an opportunity for demonstrating respect and gaining understanding might be missed. Once again, a barrier of mistrust is often erected, and opportunities for trust and engagement have been lost. Taking the time to find out where people are from and what road they have traveled as they are facing their final journey is seen as an honest attempt to understand who they are behind the diagnosis they bring. This is an initial step of establishing trust between the health care provider and community.1 

Diversity is multifaceted and includes characteristics and qualities that go beyond race, ethnicity and language. It also includes religion, socioeconomic status, sexuality, demographic identity, country of origin, and how life experiences shape these.

The United States has been recognized as a cultural melting pot; more recently, however, experts refer to the United States as a salad bowl. We are all in the same bowl, but we still have unique traditions, beliefs and values that maintain our own cultural integrities.

Understanding a Mindset of Mistrust and Betrayal in African American Culture

The issue of trust or lack of trust in the health care system by the African American community has been explored and detailed in health care literature and, most recently, with the video documentation of oral histories by patients and providers contained in the APPEAL (A Progressive Palliative Educational Curriculum for Care of African Americans at Life’s End) curriculum.8 

IOM 2003 Report - Unequal Treatment stated that “Racial & ethnic minority Americans are less likely to receive even routine medical procedures and tend to receive a lower quality of health care than non-minorities, even when access related factors, such as patient’s insurance status, income, age and severity of conditions are comparable.”

The decision to engage hospice and palliative care can evoke memories of historical mistreatment and abuse. The manner in which the initial discussion regarding options for hospice/palliative care begins sets the stage for acceptance or rejection of end-of-life care services. 1 As a people, African Americans have been clearly aware of health inequalities even before research documented the consistent and glaring realities of health care disparities.

Because of these injustices experienced throughout American life, health care providers must be willing to understand that the expectation of many African Americans—that they will not receive equal treatment.

Unless providers are willing to walk in the psychological shoes of African American families, the opportunity to establish trusting relationships will remain a challenge unfulfilled. A verbal validation of the patient/family’s history and current circumstances along with a genuine willingness to openly discuss a real plan that addresses barriers to care are essential to building trust.11 

A long history of prejudice and mistreatment has shaped the mindset of many groups. African Americans have been particularly impacted. To one degree or another, African Americans share a legacy of slavery. Part of the culture of African Americans is the history of slavery and continued disparities, economically and in health care. Providers must be willing to understand that the mistrust of the health care system evidenced in the African American community is based a history of malfeasance, neglect and inequality in health care.

Developing Trust in the Health Care System

While lack of trust is one of the primary issues regarding underutilization of hospice by African Americans, it is hoped by addressing the areas delineated above that trust will be built between African Americans and the hospice community. The following case study is an example of the importance of trust and caring.

Case Scenario

Ambulance 39 rushes through the door of the Emergency Department (ED) carrying a 65-year-old African American gentleman found lying down in his tub not breathing and without a pulse. It is unknown how long he was in the tub. His wife of 40 years discovered him. With great effort, she pulled him from the tub and started CPR. When the paramedics arrived at the house, they inserted a tube for the patient to breathe and took over the chest compressions from his wife. The health care team thought this patient was dead upon arrival in the ED, based on the length of time when the patient was last seen alive and his arrival in the ED. As the paramedics rushed thru the doors they stated, “The wife and son are right behind us. They are very anxious.” The ED team of nurses and physicians took over for the paramedics, knowing their efforts would be futile. The wife and son, upon their arrival wanted to see their loved one; they wanted to know that the health care team was at least trying to make an attempt to save him. The physician allowed the wife and son to view the resuscitation attempt of the team. Once the wife and son saw that their loved one was being worked on, they began to accept the reality that he would die. When the patient was pronounced dead, the wife and son were able to accept that the health care team had at least tried to save their loved one and not “just dismiss him.” Seeing the health care team attempt a real effort of resuscitation established trust between the team and the patient’s family and made it easier to accept his death.

Racism, stereotyping and prejudice are frequently the “normal” interaction that some groups experience when they encounter the medical system. Stereotyping, as defined by the APPEAL Curriculum, 8 is the process by which people use social categories (such as race, sex) to acquire, process, and recall information about others.

Stereotyping does serve a function. It allows persons who have some fear of engaging with certain populations an opportunity to simplify complex situations and gives them greater confidence in their ability to understand, predict, and potentially control situations and people.

Whether assumptions are made with malevolent intent or from plain ignorance of the population being served, the consequences are the same. The potential for unequal and inadequate treatment is real. Health care providers may receive messages about African Americans because of stereotyping and, consequently, interact with patients from a flawed knowledge base.

Prejudice and stereotyping are dehumanizing and interrupt the fulfillment of the goals of quality health care, one of which is adequate utilization of hospice and palliative care by a population that would benefit the most from it.11 

Knowledge is power, and power should be translated into empowering African Americans and effectively meeting their needs. Health care professionals must be educated and trained and must develop a knowledge base, and the commitment and dedication to understanding and appreciating cultural differences. To facilitate effective interaction and culturally competent care, a provider has to become knowledgeable of the background of the group/population that is being served.

African American Culture and the Impact of Religion and Spirituality

Among cultural influences, religion and spirituality of African Americans always have played a special role. Historically the church has been the place of caring, a place of acceptance regardless of education, training, degrees, economic levels, security, or lack of security. The church, in all of its diversified venues, has been a sanctuary for many in the African American community.

The influence of religion and spirituality must always be considered, and health care providers should familiarize themselves regarding how these influences will factor into the decision making regarding their health care choices.

For many African Americans, these influences are integral to their existence. Again, we must be careful not to generalize, because just as diverse as the hues of the skin color of African Americans, we find diversities of religion and belief at the end of life.

The perception of God and suffering may be a challenge for some providers to understand when they are providing care to African Americans. Culture fundamentally shapes how individuals make meaning out of illness, suffering, and dying. With increasing diversity in the United States, encounters between patients and physicians (and other health care providers) of different cultural backgrounds are becoming more common.

Thus the risk for cross-cultural misunderstandings surrounding care at the end of life is also increasing.12 Many religions are hesitant to entertain discussions regarding ending a life or withdrawing aggressive treatment.

Some persons accept suffering as a part of being human and a challenge to overcome to prove their faith in God. Other members of the African American community are conflicted because giving up aggressive treatment means that they are giving up on their hope that God will provide not only a spiritual healing in “the kingdom to come” but a physical healing in the here and now.

Imagine the potential for conflict that could be experienced by a devout Muslim who believes that “your life is entrusted to you by God and that you should do everything in your power to preserve it.” The potential for cultural clash among the medical establishment recommending hospice care, the patient and family, and the hospice/palliative care organization is high indeed.

It is important that providers not allow their lack of understanding of religion and culture to cause them to make assumptions about African Americans’ cultural and religious beliefs. Assumptions, beliefs and generalizations may lead to even greater misunderstandings during intercultural exchanges.

Health care providers should assess the cultural background of each African American family they interact with. There are diverse faith traditions and spiritual communities in which African Americans participate. Faith in God is central for many patients and families, and their belief will impact many of the decisions made when facing end of life. The dichotomy experienced from the realization that there is no possibility of medical cure and the belief that

God knows all and is in control may cause the African American family to hold on stronger to their faith. These strong statements of belief may not be well received by the health care provider, and the interaction among hospice worker and patient and family may create further mistrust.

It is imperative to inquire about values that may affect care at the end of life. Assumptions and generalizations that people of color living in one particular area have similar beliefs should never be made. Providers should become aware of the specific beliefs and practices of the populations they serve; always remembering to inquire whether an individual patient adheres to a particular belief.

If individualized assessments of religious and faith traditions are done, there is a greater likelihood that a peaceful and compassionate palliative care will result. The following key points should be considered regarding spiritual interventions in the African American population:

  • Respect the unique spiritual needs of individuals in the African American community. While hospices are generally able and open to provide 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.
  • Spiritual needs are most frequently a major priority, and the need for this type of counseling support should always be assessed early at the start of care.
  • It is imperative that hospice and palliative care programs address the spiritual needs of African Americans in a way that demonstrates respect for the community’s existing religious framework. One strategy for successful engagement is to create a network of faith leaders who will be available to provide spiritual care. A thorough assessment of the different religions and faiths represented in the community is necessary.

There should never be a delay in providing spiritual support because the hospice does not know a local imam or has failed to establish relationships with traditional and non-traditional faith leaders.

  • The program that recognizes that the church has always been the cornerstone of the African American community has identified a strong resource as they seek to provide holistic and quality end-of-life care to the community.
  • There is a need to develop educational programs that reach out to health care providers to facilitate a level of comfort in exploring the role of religion and spirituality and how religion and spirituality might conflict with the values of physicians.

Health Disparities of African Americans

Common diagnoses for patients receiving hospice care are cancer (50%), heart disease (10%), lung disease (7%), and kidney disease (3%). African Americans disproportionately have higher death rates from cancer, AIDS, and cardiovascular diseases (often secondary to hypertension and diabetes mellitus, which are more prevalent in African Americans).

Blacks are less likely than whites to receive curative surgery for early-stage lung, colon, or breast cancer. Ayanian reported the referral rate for evaluation at a transplantation center was 50.4% for black women compared to 70.5% for white women and 53.9% for black men compared to 76.2% for white men. In 1993, Whittle et al. documented that blacks are not referred for coronary artery catheterization as frequently as whites, even after presenting with symptoms suggestive of acute coronary artery disease. Disparities in care for life-threatening diseases are seen from initial presentation, referral, treatment, and ongoing management. Treatment inequalities for African Americans vary in the acute setting as well as the palliative setting.

While the numbers of African American utilizing hospice and palliative care are clear, there is still a lack of established research to study the various influences that impact utilizations and how to improve access to care for all minorities. Greiner et al 13 used data from the National Mortality Followback Survey to find that African Americans had 40% lower hospice utilizations than white Americans. However, their analysis was not independent of other socioeconomic characteristics, such as education and income, suggesting that additional research might reveal disparities not specific to race/ethnicity but also to socioeconomic status. Another study indicated that African Americans may not have the necessary knowledge to seek out or accept hospice care, again indicating that education and income might play a role in improving knowledge of available services and, thus, increase utilization. 14

Organizational Change

While the traditions and culture of African Americans are rich and unique, they are also encompassed in a history of mistrust and pain. If providers and health care professionals are to provide end-of-life care for African American communities in a culturally appropriate context, there must be addressed a variety of issues that focus on the sensitivities required by health professionals and their organizations as they care for African Americans.

The goal is to identify responsibilities and to help professionals to maximize their potentials and talents in caring for African American families for whom they have the privilege to serve.

Developing a Sense of Inclusion

An individual in an organization can begin to gain cultural competence through formal training. However, it takes consistent individual practice and the support of a culturally competent organization to continue to develop and maintain individual cultural competence.

Education, sensitivity, and awareness are all essential components of creating a climate for change, but none of these alone are sufficient to achieve a sense of inclusion. Even developing cultural competence, changing work practices, and creating leadership and management accountabilities will have little lasting impact if they do not facilitate a transformation in thinking. We must let go of the naive assumption that “we can’t dictate how you think, but can insist on how you behave.” Behavior modification alone does not produce irreversible change. The commitment to change the organizational climate of an organization starts at the top with the leadership.15 

An organization committed to serving people of color in the African American community must develop a policy of inclusion. If this is missing, changing the culture of the organization is the biggest and probably most difficult task that the leadership will take on.

Board support is critical, and bottom- line support is ultimately responsible for assuring that the organization is making progress toward achieving its mission. If there is no buy-in at this top level, it is highly probably that the leadership of the organization will follow similarly. The inconsistency in the walk and talk of the organization will be noted by the community, and additional barriers will be constructed. If an organization is experience success serving the African American community, it must first evaluate its mission and commitment to this community.

The organizational leadership is responsible for ensuring that the appropriate policies and procedures are in place to support the mission, visions, and values of the organization. The provider must consider how organizational values will affect the commitment to become a part of the fabric of the community.

There will be challenges inherent in serving a diverse population. But the potential impact of an organization demonstrating that it respects the traditions, beliefs, and values of the African American community can be significant. An organization or health care provider who will evaluate areas of compromise and change can increase the possibility of successful engagement in the community.

Just like a culturally competent individual, a culturally competent organization develops and improves over time. As an organization matures in the area of cultural competence, it will introduce and fully develop the following elements.16 

  • Openness and respect for diverse staff and clients.
  • Access to a diverse cadre of professional interpreters.
  • Signs and written materials in the languages of its clients.
  • A culturally diverse staff that ideally reflects its client mix.
  • Cultural competence orientation and training for medical and non-medical staff at all levels.
  • Services and programs that address the very different needs of different client populations.
  • Routine evaluation of treatment outcomes by racial, ethnic, and language groups.

Self-Inquiry and Awareness

Health care professionals who would be successful in working with African Americans and their families must come to grips with their own feelings about their own mortality, life’s end, and the ’in-between’ life processes. Harper addressed these areas in her book, Death: The Coping Mechanism of the Health Professional . The premise of this volume is specifically that “professional anxieties in catastrophic diseases and terminal illnesses are observable phenomena for which a coping mechanism can be developed.”

The health care professional is then enabled to provide culturally sensitive caregiving which gives strength and support to patients and relatives. Central to this thesis is the Schematic comforAbility Scale in Coping with Professional Anxieties in Death and Dying. The Cross Model of Cultural Competence presents six demarcations on the Cultural Continuum: Cultural Destructiveness, Cultural Incapacity, Cultural Blindness, Cultural Precompetence, Cultural Competence and Cultural Proficiency. Characteristics of “Cultural Proficiency” in the individual or organization are to actively educate others about cultural differences; move beyond merely accepting, tolerating or accommodating cultural differences; hold cultures in high esteem; seek out knowledge, develop skills to interact in diverse environments; and align with and be comfortable interacting in multicultural settings.

Recommendations and Interventions Strategies Relative to African Americans and End-of-Life Care

This paper has addressed a variety of areas relative to African Americans facing the end of life. Culture and its many ramifications was the major focus by design and purpose because, after all, culture matters, just as race matters for all people. These recommendations have been forged out of the essence of knowledge and forethought of long-held traditions, experience, and the current knowledge of the authors of this paper; albeit, a bit of bias will be involved.

This stands out clearly and for good reason, as the presentation is about African Americans, perceived, developed, and written by three African Americans. Thus, the recommendations and suggestions made in the Future of Hospice for African Americans: Clinical Policy and Caregiver Perspectives are derived from practice, research, intervention strategies, and recommended policy changes.

Community outreach and marketing of hospice and palliative care services must be planned and intentional if the desired population is to be maximally engaged. The grapevine network of the African American community is a powerful force and can be just as effective as African drums that were used during times of slavery to communicate critical knowledge and information. Personal experiences and word-of-mouth networking may make or break any program of services outreach.1 

Focus on Strengths Instead of Weaknesses. Engage the community by inventorying its assets. Community mapping has emerged as a successful strategy for community engagement. While affirming the history of the African American community, this interaction focuses on building and enhancing the existing strengths and assets of a community rather than on reducing or mitigating its deficits. Working with culturally diverse African American communities requires that we must first acknowledge that culture is a predominant factor in shaping behaviors, values, and institutions.

Utilize Nontraditional Methods. Traditional methods of going into African American communities may not yield the same results as other communities. As a community, African Americans are empowered if they can identify with the messenger and feel that the message being delivered can be trusted and is in their best interest. Sending an African American hospice worker to give a talk to a local community group may be an effective primary measure of engagement. It is important to realize that the barrier of mistrust is hard to breach, because there is still a belief that the hospice employee is speaking on behalf of the organization and may not be looking out for the best interests of the community.

Identify the Real Leaders and Stakeholders. It is imperative to identify the true stakeholders in the community and be aware that while there may be some similarities, the socioeconomic class of the community may change the dynamic of the choice of message as well as messenger. Some social classes may perceive that the words of the pastor, bishop or reverend are gospel when it comes to making decisions about health care choices. Other communities may choose to trust the message only if it comes with science and documented research. Regardless of the community, it is a mistake to assume that all African American communities share the same value system and resources. The work of inventorying the stakeholders and leaders must be done on an individual community basis before proceeding to engage.

Take Advantage of Strong Community Resources. Enlist the help of leaders and stakeholders in the community to assist in your outreach and engagement. Listen to the leaders and tailor the outreach programs according to the recommendations of the community leaders. Recognize that outreach programs can have a greater impact when implemented in conjunction with community leaders such as ministers and civic leaders.

It may be necessary to allow the community to take the lead and have the hospice program take a back position as it supports the capacity of the organization. This level of cooperation will gain significant ground in building trust with the African American community.

Communication Is Critical. The appropriate use of language and understanding styles of communication are important aspects of effective engagement. A health care provider may assume that an African American family is being recalcitrant when they refuse to sign or accept hospice services. In reality, the client’s level of literacy or issues of trust should be considered as alternative reasons.

Become a Genuine Model to Your Community. Make sure your hospice is a model for the community. If you serve a large demographic of African Americans, it is imperative to explore opportunities of outreach. Engage appropriately, and show respect for the cultural heritage and uniqueness of the African American community. It is not enough to say that you care about the diversity of the community you seek to serve. Genuine caring is demonstrated by a respect and sensitivity to diverse cultures served by the hospice organization.

This is a huge step toward showing a community that the interests of African Americans are important to you. This will be reflected in your history of recruitment and hiring practices and written policies. Hospices cannot simply rely upon sending its own representatives into a community to provide hospice education.

Do Not Make Assumptions. Don’t assume that because you understand that hospice services are great that you should enter a home and begin talking about what the organization is going to do to make someone’s life better. It is imperative to allow the dialog to facilitate the opportunity of the patient and family to tell their story. Let the African American family tell what is needed to make life better.

As hospices and palliative care programs become more open to non-traditional methods of community engagement that have proven to be successful in outreach, they will gain a greater understanding of the challenges that African Americans face when confronted with advanced illness; thus, the uniqueness of African Americans’ approach to dealing with living, surviving, and dying will be better understood.1

Organizations must develop a planned strategic evaluation of their organizational positions, policies and practices for the engagement of diverse groups of people. The use of self-awareness tools (many are available on the Web), such as Toolkit for Serving Diverse Populations available from National Hospice and Palliative Care Organization (NHPCO), will assist the organization in its strategic outreach.

We have identified the impact of mistrust in the medical system, which has resulted from abuses of medical experimentation and the legacy of slavery and social injustice; the lack of cultural proficiency and working knowledge of African American traditions, beliefs, and values; the need for campaigns that increase the use of advance directives; unequal treatment in the health care system and unequal access to care; no insurance or inadequate insurance; and the need for systemic health care practices and policies that diminish/remove barriers to utilization of hospice and palliative care by African Americans.

Hospice Recommendations

It is recommended that:

  • All hospices focus their activity on access and the development of a fully integrated effort across a wide scope of health care organizations, social care facilities, and spiritual and religious programs in creating community ownership of hospice programs.
  • Hospice and palliative care programs develop proactive programs that anticipate the needs of African American communities and that these programs serve as a relationship builder in forging integrated services and continuity of care in the community
  • Hospices communicate the opportunities for care and the use of services to African Americans
  • Hospices establish higher, more visible profiles relative to their programs and services for the diverse African American communities within the suburban, rural, urban, and metropolitan areas.
  • A willingness to accommodate more important inpatient care within the “20% rule” is a possible policy change which may enhance the use of hospice care in with African Americans which may address the lack of and /or caregiver burden in this community.
  • Changing the policy of the hospice benefit to a (longer time) where aggressive palliative management is a model for all patients may provide quality care along the spectrum of a patient’s disease instead of only the last six months of life.

If hospices and end-of-life programs are going to meet the needs of African Americans, they need to take new and necessary steps in recruitment of board members, volunteers and staffs reflective of this population group.

This would include a total agency assessment of end-of-life and cultural issues relative to African Americans. The organization must commit to develop an African American strategy or agenda to keep the issues on the front burner, i.e., in the forefront of their strategic planning. There can be no out-of-sight, out-of mind approach. It is further recommended that every hospice administration evaluate his or her staff and make the best determination of who can best undertake an “African American Strategy.” This is not segregation. It is integration in the best sense of the word.

The summary of recommendations is as follows:

  • Address the mistrust issue directly.
  • Promote cultural proficiency.
  • Educate health care providers, the African American community, and the majority community, and major stakeholders financing health care regarding hospice use and referral.
  • Acknowledge and continue to monitor for unequal care/access.
  • Level the reimbursement field to provide better access to hospice care.
  • Empower the African American community by identifying its leaders and resources, and involving them in promoting hospice use.
  • Develop policies for health care providers that allow for maximum utilization of hospice by patients.


This paper has examined the future of hospice for African Americans by reviewing the historical perspective, the data regarding hospice use, and reviewing the literature identifying barriers to hospice use. It has also made recommendations on increasing hospice use by and for African Americans. While admittedly there are still a lot of unanswered questions regarding why hospice is underutilized—i.e., research is needed in this area—implementation of the recommendations in this paper will definitely increase use of hospice, which overall will begin to address some of the disparities in health care for African Americans with advanced illnesses, and their families and caregivers.


1. Burrs F. Asset Mapping: A New Paradigm to Community Engagement. 1st National Access Conference. National Hospice and Palliative Care Organization. Alexandria, Va. 2005.

2. Harper B. Panel discussion on cultural diversity and end-of-life care. Last Acts End of Life Conference. May 2002. Tampa, Fla.

3. Walsh D. (1998). The Medicare Hospice Benefit: A critique from palliative medicine. J Palliat Med. 1998;(1):147-149.

4. World Health Organization. Accessed April 12, 2005.

5. National Hospice and Palliative Care Organization. National Data Set 2004.

6. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health. Institute of Medicine. March 20, 2002.

7. Sherman DW. Access to Hospice Care. J of Palliat Med. 2000;(3):407-411.

8. APPEAL Curriculum. Payne R. Secundy M. 2003.

9. The National Center for Cultural Competence. Infusing Cultural & Linguistic Competence into Health Promotion Training. Georgetown University, Washington, DC. Accessed May 12, 2005.

10. Nardi D, Siwinski-Hebel S. Cultural Issues in Home Care. Advance for Nurses; 2005. Vol 7. No 12.

11. Burrs F. Who is Missing from the Table?: Expanding Hospice Access. Colorado Hospice Association Spring Conference. Denver, Colo. May 2004.

12. Kagawa-Singer M, Blackhall L. Negotiating Cross-Cultural Issues at the End of Life: You Got to Go Where He Lives. JAMA. 2001;(286):2993-3001.

13. Greiner KA, Perera S, Ahluwalia JS. Hospice usage by minorities in the last year of life: results fro the National Mortality Followback Survey. Journal of the American Geriatric Society. 2003;(51):970-978.

14. Reese DJ, Ahern RE, Nair S, et al. Hospice access and use by African American: Addressing cultural and institutional barrier through participation research. JAMA. 1999;(284):2518-2521.

15. Guillory W, Guillory D. The Roadmap to Diversity, Inclusion, and High Performance. Healthc Exec. 2004;(25):26-29.

16. The Manager’s Electronic Resource Center. The Provider’s Guide to Quality and Culture. Culturally Competent Organizations. Accessed June 1, 2006.