Meeting the Needs of Minority Communities Near the End-of-Life: Talking Points by Gwendolyn W. London, D.Min.
July 18, 2000
The D.C. Partnership to Improve End-of-Life Care is one of 21 organizations throughout the country that are dedicated to organizing communities to work together to improve the care of the dying. I have been personally involved in end-of-life care since 1982 when I became a volunteer at Hospice of Washington, the first inpatient hospice facility in the country. Since that time, my work as a hospice chaplain, a hospital chaplain and as Associate Minister of an 1800 member urban church, has provided me with many rich opportunities to minister to persons during their last days of life. From these various professional opportunities and from my own personal experience as an African-American woman in ministry, I have formed what I think is a first-hand perspective on the issues of minorities dealing with care at the end of life.
I believe that lack of trust is the major factor in the way that members of minority communities interface with the health care system at all stages of the life spectrum and particularly at the end of life. Since my background has been primarily in working in the African-American community, I would like to start from that frame of reference but I believe that many of the factors that come into play can be extrapolated to other minority groups.
Many studies have shown that African-Americans are less likely that white Americans to receive a wide range of medical services, including potentially life saving surgical procedures. In fact, the pattern of receiving less than optimal health care starts before birth and extends throughout the dying process. National statistics document higher infant mortality rates, inadequate preventive care, disparities in recommendations for medical treatments and higher death rates for diseases such as cardiovascular disease, cancer and AIDS. Because of this pattern of lack of access to health care as well as well-documented historical incidents of research and treatment abuse, minority patients and family members are less likely to feel that members of the medical establishment can be trusted to serve their best interests or even try to understand their feelings and concerns when a medical crisis arises. Because this attitude of suspicion and mistrust is usually unspoken, and because it is very different from the way that most physicians think that they are viewed, it becomes a barrier that is often difficult to identify and even more difficult to overcome.
The primary result of this attitude of distrust is a very strong reluctance to give up aggressive treatment options at the end of life, even when palliative care or hospice care may be more appropriate. By aggressive treatment I mean the continued utilization of the wide range of invasive medical treatments that are geared toward cure, even when the patient's disease has clearly reached a point where cure is no longer a possibility.
Many older members of minority communities have not traditionally had access to health care. Therefore, when they are finally eligible to receive benefits under Medicare they have a very strong desire to receive everything that the health care system has to offer. When asked to forgo aggressive treatment for terminal conditions or when advised that hospice or palliative care may be more appropriate, they are unwilling to give up their hard earned entitlement. I have worked with patients who have been adamant in their refusal to consider admission to a hospice until they have had that one last hospitalization during which the physician indicates that there is nothing more that can be done. Because minority patients have had so little access to health care, extraordinary measures are viewed as acceptable and many patients will express that they want everything done even if that means that they end up on life support machines, an attitude that often conflicts with the view of the health provider.
Because of the high incidence of drug addition in many minority communities, there is a great ambivalence regarding the use of narcotics for pain relief. Many patients have first hand experience in their families or their communities so the efforts of the health professional to encourage the use of narcotics for pain control are met with suspicion and resistance even in terminal conditions that are accompanied by a great deal of pain. I have heard patients express that there is a conspiracy in this country to control the African-American community by turning everyone into drug addicts, so other methods of pain control often have to be tried before narcotics can even be suggested even when the stronger medication is clearly indicated.
From a financial perspective, the dying person is often the sole or primary provider of income from some form of pension, so the death of the patient creates a severe threat to the family's financial well-being. Therefore the patient and family focus is on extending life through all possible means rather than allowing the illness to progress along a natural course, again an unspoken concern not usually understood by health providers.
Many members of minority communities equate the acceptance of hospice or palliative treatment with giving up on God's chance to perform a miracle or cure. Believing that only God can determine when a person will die, they are not willing to accept the fact that a family member is dying and often express their reluctance to forego aggressive treatment with the sentiment, "Where there is life, there is hope." Because a theology of suffering is often an integral part of the religion practiced by many minority groups, a physician's efforts to press for palliative care as a method of relieving pain is often seen as the physician's attempts to play God. This is interpreted as a violation of the patient's personal covenant with God, a major taboo for persons of color.
Spiritual Care plays a very important part in the lives of minority patients and families. By spiritual care I mean the multiplicity of religions and faith traditions present in the minority community. Because many patients belong to spiritual communities that they or other family members have helped to establish, it is not unusual for a patient to have been a part of a specific faith group or spiritual community for more than 40 years. Because this faith perspective is central to the world view of the minority patient and family it tends to influence all considerations and decisions in the event of a health crisis. This is particularly true at the end of life because in the absence of the possibility of a medical cure, the patient is forced to fall back on their belief in a God who is all-knowing and all-powerful and this belief takes precedence over the rational, logic that is usually applied by the members of the medical establishment. Again, the inherent distrust makes it difficult if not impossible to rely on a physician when the physician's view is diametrically opposed to the faith of the patient and family beliefs.
A number of things can be done to better address the concerns of minority communities relating to end of life care in the future. First, we need to develop a comprehensive physician education effort to sensitize physicians and other members of the health care system to the pervasive impact of the unspoken attitude of distrust that is an integral part of minority perceptions about health care, particularly as it relates to care at the end of life. At a very minimum, health care providers need an in-depth orientation in the values and belief systems of minority patients, particularly as it relates to palliative care. It is important that this orientation be conducted by persons who are representative of the minority culture who can translate the unspoken values and perceptions that come into play.
Secondly, we should develop an extensive physician education program that allows physicians to explore the role of religion/spirituality and how those values can often conflict with the values of medicine and psychology can play an important part in that process. I also believe that there is a clear need for research that compares and contrasts the values of medicine with the values of religion, particularly as it relates to the meaning of life, and then additional research to explore how addressing the difference in values can lead to greater understanding.
Third, because African-American patients often seek out African-American physicians who agree with their mistrust and suspicion of palliative care, there is a need to develop more palliative care training programs geared toward African-Americans and other minority physicians so that these physicians will begin to understand and appreciate the true value of care that does not see curative treatment as the ultimate goal. One example of such a program is the program at North General Hospital in Harlem New York that is run by Dr. Richard Payne.
Fourth, we need to work to revamp the Medicare system to allow reimbursement for palliative care in order to remove the stigma attached to the more traditional hospice benefit provision, specifically, the 6 month prognosis provision.
Fifth, we need to a initiate a broad-based public education program to inform persons about the real limitations of aggressive medical treatment and how palliative/hospice care is often the most humane approach to care at the end of life. This effort needs to be culturally sensitive and include materials that are specifically designed to reach members of the minority communities.
Finally, let me say that from all of my years of experience with hospice, what I have learned is that patients and families are generally very grateful for the care that they receive because of the incredible level of support that it provides. Most families that have experienced this care are amazed at how peaceful a Hospice death can be and express their desire to have a similarly peaceful death surrounded by their loved ones. They especially appreciate the wide variety of support that they receive from the many professional disciplines that are there to assist them, not only the medical professionals like the doctor, the nurse and the home health aide, but especially those disciplines that address the psycho social concerns, the social worker, the chaplain and the volunteer. Patients and families recognize that this is a wonderful model designed to speak to the body, mind and spirit. I have also been told by patients that they especially appreciate what they describe as an unconditional love and that they were amazed to experience the trust, respect and appreciation that many have never received from the health care system before. This is the kind of experience that can go a long way to overcoming the mistrust and suspicion that often characterizes the experience of the minority at the end of life.
Gwendolyn W. London, D.Min.
Executive Director, Partnership for Caring