Discussions about African-Americans and End-of-Life Decision Making
Hospices and other organizations that care for people at the end of life are gaining an increasing awareness of the need to learn more about incorporating cultural competency into their care. This month HFA's Lisa McGahey Veglahn talked to two professionals who are combining their experiences to bring a greater awareness of hospice and end-of-life issues to the African-American community in Kansas City.
Gloria Thomas Anderson, MSW, is the author of The African-American Spiritual and Ethical Guide to End of Life Care.
Jeannette Ford, Community Relations Director for Kansas City Hospice, has developed a new program utilizing Thomas Anderson's booklet.
Interview with Gloria Thomas Anderson, MSW
Gloria Thomas Anderson, a licensed master’s degreed social worker and clinical instructor, is an African-American international author and motivational speaker. Anderson teaches cultural diversity and social work practicum integration courses, has authored three books, and presents and lectures on a wide range of social service and inspirational topics.
In the process of developing and writing The African American Spiritual and Ethical Guide to End of Life Care, Anderson became a subject-matter expert and presented her paper in 2006 to the North American International Conference on Spirituality and Social Work in Ontario, Canada.
Q. What interested you in developing this booklet?
A. I was doing a practicum at the VA Hospital as part of my Master’s program in Social Work. At the VA I worked with dialysis patients, many of whom were older and African-American. As we talked, they would often share with me their experiences with the healthcare system that had led to a feeling of mistrust.
I also was fortunate to be able to sit in on some of the ethics committee meetings at the hospital. Hearing the moral dilemmas that these families faced, along with my conversations with patients, made me realize that many of the issues in medicine are not as clear-cut as one might think.
I witnessed a scenario where a nurse, who happened to be white, was asking an older African-American woman if she had an advance directive. This nurse meant no harm; she was simply doing her job. But somewhere in the translation this woman felt that the nurse was trying to get her to go into a nursing home. In fact, the sub-title of my booklet, “What Y’all Gon’ Do With Me?” came directly from what this woman expressed to the nurse.
Later on I worked with a non-profit organization where I helped to develop a cultural competency training manual. As my interest in this issue grew, I was surprised to discover that not a lot of cultural-specific literature existed that dealt with end-of-life issues. Because I am a writer, I realized that I could combine these two passions to help meet this need. I was fortunate to have a great deal of input from a variety of professionals, including social workers, nurses, chaplains, and staff members at the Center for Practical Bioethics.
Q. Tell me more about the title and style of your booklet.
A. As I mentioned, the title came directly from an encounter that I witnessed. I also decided that I wanted to write a booklet that was not clinical, but conversational—something that my own parents would read and not put down right away because of the subject matter! I received a grant through the Women’s Council at the University of Missouri Kansas City, which provided the funding to publish the booklet. I also received travel grants from various sources to present my research at the North American Spirituality and Social Work conference in Ontario, Canada. I soon realized how much of an audience there really was for this type of culturally-sensitive information.
Currently, I am excited about collaborating with Kansas City Hospice to use my booklet as a free educational tool locally in African-American communities throughout their nine-county service area. My goal is to offer the booklet to those who can benefit most and to provide information that is helpful in planning end-of-life care. For those interested, an outreach kit will be available soon that contains the newest reprint of the booklet and other materials designed to help connect and provide services to African-American communities in their regions.
Q. Why do you think that African-Americans have traditionally not used hospice care?
A. My answer is based on research and my own observation and experience. There is limited awareness of hospice care in the African-American community, and hospice has not been actively promoted within many African-American communities. But for those families who have experienced hospice, it can be a real revelation to learn about the kind of support hospice offers not just for the dying person, but also for the caregivers.
As we discussed, for many older African-Americans, there is a general mistrust of the healthcare system. They still remember the Tuskegee experiments and the heart-breaking impact. Unfortunately in our society, especially for older African Americans, the message conveyed to many was, “Why would anyone care if I lived or died?” Because of this mistrust, some African Americans traditionally have not gone to the doctor regularly and often don’t get treated in the early stages of an illness. So when they do finally arrive at the ER or the hospital, often in the later stages of an illness, it can be a great challenge for healthcare personnel to treat them and provide the full range of services available.
One important cultural consideration in the African-American community is the issue of spirituality and faith. Many African Americans believe strongly that God will heal them. But doctors play an important role, too; in many ways, they are seen as God’s “instrument” for that healing. So when faced with making decisions about end-of-life care, there’s a spiritual component—if you decide to stop treatment, are you somehow “playing God?” This dilemma can cause a great deal of spiritual anguish to patients and their families. And I think there’s a feeling that’s universal in times of illness—I’m not going to “give in” and I’m not going to “give up.”
Interview wih Jeannette Ford
Jeannette Ford has been Director of Community Relations at Kansas City Hospice since 1980.
Q. Traditionally, African-Americans have made up only a small percentage of those who use hospice care. Is that true in Kansas City, and what do you see as some of the reasons for that?
A. Actually, African Americans make up a larger percentage of our families at KC Hospice than the national average, although it is still a relatively low number. Culturally, many families don’t like to talk about death and dying; and by the time there is a willingness to do so, it is often too late.
Historically, there are issues of mistrust within the African-American community toward the healthcare system. Hospitals are often seen as the “Cadillac” of healthcare—that’s where one goes to get the full range of available treatment and cure. So for many, a system like hospice that has traditionally focused on care in the home is not seen as a benefit but as a deprivation.
Changes in our society and in our reimbursement system also play a role. For many families, both adult children may work outside the house, so there is not a full-time caregiver available. And ironically, in part due to advances in medicine, we are now seeing much sicker people with more complex needs. For many families, these situations can be overwhelming and caring for a family member at home is too much.
In Kansas City, we’ve been able to address some of these issues with our 24-bed inpatient facility. At the Hospice House, we have definitely cared for families here who might have otherwise died in the hospital, or would have gone home but risked a high probability of re-hospitalization.
Q. Have you actively promoted hospice care to minority populations in Kansas City?
A. Because hospice is a voluntary health care option, we always want to be sure it’s being utilized by those who really want it. We have met with families who decide that they can handle their loved one’s care without hospice, and that is fine. And particularly in the African-American community, where there has been a history of not being able to access good medical care, there are families for whom hospice limits what they perceive as their opportunity to always try one more treatment.
We always aim to provide information about hospice as an option, but because of the financial limitations of our reimbursement system, hospice may never fully meet the needs of those who want that type of “open door” system.
Q. Tell us more about working with Gloria Thomas Anderson and utilizing her booklet in your outreach efforts.
A. Gloria’s social work advisor had called me about placing another student at KC Hospice. While we were talking she mentioned Gloria’s booklet and I saw an opportunity. KCH had been looking for a way to build relationships within the African-American community in Kansas City. Basing a program around Gloria’s booklet, we’ve hired an internal coordinator and are embarking on a three-year project that we hope will allow us to demonstrate the benefits of hospice care.
In some ways the program reflects a “typical” hospice marketing plan—hold meetings about hospice care, provide booklets and build a relationship as a community resource. But we will be targeting a more specific audience, the African-American community, and so we plan to build relationships, with churches and faith communities first. For many African-Americans, the church plays a core role in their lives and in their neighborhoods.
Over the next three years, we hope to see—by demonstrating the benefits of hospice, will we make an impact and change attitudes about hospice?
Q. What about Gloria’s booklet caught your attention?
A. The booklet is written from her perspective—by someone who has lived the experience. Having watched family members struggle with the issues of end-of-life decision making, she understands the obstacles very clearly. I also appreciate how she has intertwined the issue of faith in the subject matter. I also liked how the booklet discusses not only hospice but the broader topic of Advance Directives. That will allow us to really open up our presentations to a wider range of audiences and subject matter, and help people to think about these issues long before hospice may be necessary.
If you live in the Kansas City area and would like to receive a copy of this booklet or learn more about Kansas City Hospice's program, please contact Ms. Ford at jford@kchospice.org.
If you live outside of Kansas City, you may request a booklet by emailing Ms. Thomas Anderson at gloria@hearttones.com.
Gloria Thomas Anderson, MSW, is the author of The African-American Spiritual and Ethical Guide to End of Life Care.
Jeannette Ford, Community Relations Director for Kansas City Hospice, has developed a new program utilizing Thomas Anderson's booklet.
Interview with Gloria Thomas Anderson, MSW
Gloria Thomas Anderson, a licensed master’s degreed social worker and clinical instructor, is an African-American international author and motivational speaker. Anderson teaches cultural diversity and social work practicum integration courses, has authored three books, and presents and lectures on a wide range of social service and inspirational topics.
In the process of developing and writing The African American Spiritual and Ethical Guide to End of Life Care, Anderson became a subject-matter expert and presented her paper in 2006 to the North American International Conference on Spirituality and Social Work in Ontario, Canada.
Q. What interested you in developing this booklet?
A. I was doing a practicum at the VA Hospital as part of my Master’s program in Social Work. At the VA I worked with dialysis patients, many of whom were older and African-American. As we talked, they would often share with me their experiences with the healthcare system that had led to a feeling of mistrust.
I also was fortunate to be able to sit in on some of the ethics committee meetings at the hospital. Hearing the moral dilemmas that these families faced, along with my conversations with patients, made me realize that many of the issues in medicine are not as clear-cut as one might think.
I witnessed a scenario where a nurse, who happened to be white, was asking an older African-American woman if she had an advance directive. This nurse meant no harm; she was simply doing her job. But somewhere in the translation this woman felt that the nurse was trying to get her to go into a nursing home. In fact, the sub-title of my booklet, “What Y’all Gon’ Do With Me?” came directly from what this woman expressed to the nurse.
Later on I worked with a non-profit organization where I helped to develop a cultural competency training manual. As my interest in this issue grew, I was surprised to discover that not a lot of cultural-specific literature existed that dealt with end-of-life issues. Because I am a writer, I realized that I could combine these two passions to help meet this need. I was fortunate to have a great deal of input from a variety of professionals, including social workers, nurses, chaplains, and staff members at the Center for Practical Bioethics.
Q. Tell me more about the title and style of your booklet.
A. As I mentioned, the title came directly from an encounter that I witnessed. I also decided that I wanted to write a booklet that was not clinical, but conversational—something that my own parents would read and not put down right away because of the subject matter! I received a grant through the Women’s Council at the University of Missouri Kansas City, which provided the funding to publish the booklet. I also received travel grants from various sources to present my research at the North American Spirituality and Social Work conference in Ontario, Canada. I soon realized how much of an audience there really was for this type of culturally-sensitive information.
Currently, I am excited about collaborating with Kansas City Hospice to use my booklet as a free educational tool locally in African-American communities throughout their nine-county service area. My goal is to offer the booklet to those who can benefit most and to provide information that is helpful in planning end-of-life care. For those interested, an outreach kit will be available soon that contains the newest reprint of the booklet and other materials designed to help connect and provide services to African-American communities in their regions.
Q. Why do you think that African-Americans have traditionally not used hospice care?
A. My answer is based on research and my own observation and experience. There is limited awareness of hospice care in the African-American community, and hospice has not been actively promoted within many African-American communities. But for those families who have experienced hospice, it can be a real revelation to learn about the kind of support hospice offers not just for the dying person, but also for the caregivers.
As we discussed, for many older African-Americans, there is a general mistrust of the healthcare system. They still remember the Tuskegee experiments and the heart-breaking impact. Unfortunately in our society, especially for older African Americans, the message conveyed to many was, “Why would anyone care if I lived or died?” Because of this mistrust, some African Americans traditionally have not gone to the doctor regularly and often don’t get treated in the early stages of an illness. So when they do finally arrive at the ER or the hospital, often in the later stages of an illness, it can be a great challenge for healthcare personnel to treat them and provide the full range of services available.
One important cultural consideration in the African-American community is the issue of spirituality and faith. Many African Americans believe strongly that God will heal them. But doctors play an important role, too; in many ways, they are seen as God’s “instrument” for that healing. So when faced with making decisions about end-of-life care, there’s a spiritual component—if you decide to stop treatment, are you somehow “playing God?” This dilemma can cause a great deal of spiritual anguish to patients and their families. And I think there’s a feeling that’s universal in times of illness—I’m not going to “give in” and I’m not going to “give up.”
Interview wih Jeannette Ford
Jeannette Ford has been Director of Community Relations at Kansas City Hospice since 1980.
Q. Traditionally, African-Americans have made up only a small percentage of those who use hospice care. Is that true in Kansas City, and what do you see as some of the reasons for that?
A. Actually, African Americans make up a larger percentage of our families at KC Hospice than the national average, although it is still a relatively low number. Culturally, many families don’t like to talk about death and dying; and by the time there is a willingness to do so, it is often too late.
Historically, there are issues of mistrust within the African-American community toward the healthcare system. Hospitals are often seen as the “Cadillac” of healthcare—that’s where one goes to get the full range of available treatment and cure. So for many, a system like hospice that has traditionally focused on care in the home is not seen as a benefit but as a deprivation.
Changes in our society and in our reimbursement system also play a role. For many families, both adult children may work outside the house, so there is not a full-time caregiver available. And ironically, in part due to advances in medicine, we are now seeing much sicker people with more complex needs. For many families, these situations can be overwhelming and caring for a family member at home is too much.
In Kansas City, we’ve been able to address some of these issues with our 24-bed inpatient facility. At the Hospice House, we have definitely cared for families here who might have otherwise died in the hospital, or would have gone home but risked a high probability of re-hospitalization.
Q. Have you actively promoted hospice care to minority populations in Kansas City?
A. Because hospice is a voluntary health care option, we always want to be sure it’s being utilized by those who really want it. We have met with families who decide that they can handle their loved one’s care without hospice, and that is fine. And particularly in the African-American community, where there has been a history of not being able to access good medical care, there are families for whom hospice limits what they perceive as their opportunity to always try one more treatment.
We always aim to provide information about hospice as an option, but because of the financial limitations of our reimbursement system, hospice may never fully meet the needs of those who want that type of “open door” system.
Q. Tell us more about working with Gloria Thomas Anderson and utilizing her booklet in your outreach efforts.
A. Gloria’s social work advisor had called me about placing another student at KC Hospice. While we were talking she mentioned Gloria’s booklet and I saw an opportunity. KCH had been looking for a way to build relationships within the African-American community in Kansas City. Basing a program around Gloria’s booklet, we’ve hired an internal coordinator and are embarking on a three-year project that we hope will allow us to demonstrate the benefits of hospice care.
In some ways the program reflects a “typical” hospice marketing plan—hold meetings about hospice care, provide booklets and build a relationship as a community resource. But we will be targeting a more specific audience, the African-American community, and so we plan to build relationships, with churches and faith communities first. For many African-Americans, the church plays a core role in their lives and in their neighborhoods.
Over the next three years, we hope to see—by demonstrating the benefits of hospice, will we make an impact and change attitudes about hospice?
Q. What about Gloria’s booklet caught your attention?
A. The booklet is written from her perspective—by someone who has lived the experience. Having watched family members struggle with the issues of end-of-life decision making, she understands the obstacles very clearly. I also appreciate how she has intertwined the issue of faith in the subject matter. I also liked how the booklet discusses not only hospice but the broader topic of Advance Directives. That will allow us to really open up our presentations to a wider range of audiences and subject matter, and help people to think about these issues long before hospice may be necessary.
If you live in the Kansas City area and would like to receive a copy of this booklet or learn more about Kansas City Hospice's program, please contact Ms. Ford at jford@kchospice.org.
If you live outside of Kansas City, you may request a booklet by emailing Ms. Thomas Anderson at gloria@hearttones.com.
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2 Comments:
What a great testimony you have it alone inspires the spectators about the end of life and interview which have done is appreciable !!!!!
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Aditi
Addiction Recovery Florida
Addiction Recovery Florida
Very good article and discussion. This is a big help. End of Life issues in the African American community is seen sometimes as "Taboo". Candid conversations and pragmatic advice from professionals can only help everyone involved.
Philip Smith
CEO
Globla Staffing Associates
www.GlobalStaffingAssociates.com
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