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REV. Dr. Lenny Marshall Big Bend Hospice Inc. – Tallahassee, Florida

O vercoming Barriers from a Spiritual Context in Advanced Care Planning in the African American Community. REV. Dr. Lenny Marshall Big Bend Hospice Inc. – Tallahassee, Florida. Goals :.

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REV. Dr. Lenny Marshall Big Bend Hospice Inc. – Tallahassee, Florida

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  1. Overcoming Barriers from a Spiritual Context in Advanced Care Planning in the African American Community REV. Dr. Lenny Marshall Big Bend Hospice Inc. – Tallahassee, Florida

  2. Goals : • This workshop will unpack the barriers and fears of the preparation of end of life care in the African American community from a spiritual and social perspective. A plan of action will be introduced for better engagement from the medical community to include chaplains and physicians to turn the trend of ACP around in the African American Community.

  3. Upon completion of this workshop, you will be able to • 1. Have a look at the studies and research involving the application and implementation of advanced plan caring in the African American community. • 2 . Be informed of the fears that have been in existence for years about end of life care in the African American Community. • 3. Have a better insight of the African American spiritual experience as a key that relates to advanced care planning. • 4. Be introduced to tools that can be put to use in overcoming barriers when having discussions on ACP with African Americans.

  4. Introduction to the dilemma and the conversation : • There are significant obstacles to implementing advanced care planning tools in African American communities. African – Americans are considered the most religious racial group in America and have the most religious concerns about advanced care planning. Research indicates that African Americans are more accustomed to request aggressive end of life care. The lack of trust that African Americans have in the health care system triggers a reluctance to speak about health care options.

  5. What the Research Shows : • In 2011, the National Center for Health Statistics conducted the first national analysis of racial discrepancies in end – of –life planning. The research showed that African Americans in home health care were half (50 percent) as likely as whites to have an advance directive such as a living will or a DNR. (1) 1. The research suggests that this disparity may be attributed to African Americans being willing to endure unwanted medical procedures and experience unnecessary pain when they have a life threatening illness. 2. The desire for African Americans to try anything that may work through the belief that “God is able” tends to be a driving force in such decisions. (1) AARP Bulliten, Cynthia Ramnarace, January 7, 2011

  6. What the Research Shows Continued • According to federal data of 2015 , one third of eligible African American Medicare beneficiaries complete advanced care planning documents.(2) • 16% of African Americans complete a advanced care planning document. (3) • According to the Pew Research on views on End of Life Medical Treatments 61% of African American Protestants say that they would tell their doctors to do everything possible to save their lives and that they would fight until the end. (4) • The Pew Research also shows that 41% of Black Protestants suggest that there are circumstances in which a patient should be in control of whether they live or die instead of depending on God for healing.(5) • The Pew Research also shows 32 % of African Americans would have a doctor stop all treatment if they were diagnosed with a terminal illness.(6) (2) Life Matters Media , “Perceptions of End Of Life Care Differ Sharply Between African Americans and White Americans” 2015, Ronald Piana (3), (4), (5), (6), Pew Research Religion & Public Life , 2013 “ Views on End of Life Medical Treatments.”

  7. What the Research Shows Continued The NHPCO conducted a study in 2006 on two African American end of life focus groups in St Louis. Some of the responses they gave in regards to advanced care planning included: (7) • Some felt it was culturally taboo to have a discussion about it. • Some felt that a discussion of advanced care planning was a betrayal to their faith. • Many used the term “advanced care planning” interchangeably with end-of-life care, which they connected with life insurance and funeral planning. • There were many that thought that advanced care planning referred to an agency or organization where all advanced directives are stored. (7) National Health Palliative Care Organization, 2006

  8. The Factors of End of Life that Affect End of Life Planning for African Americans • There is a general mistrust of physicians and the health care system when it comes to African Americans. There is a historical component that is rooted in prior experiences between African Americans and health care. One well known betrayal according to Dr. Kimberly S. Johnson a palliative care specialist at Duke University is the infamous Tuskegee syphilis experiment carried out from 1932-1972 on unsuspecting black men in Alabama. (8) • There is a percentage of African Americans who feel that they receive sub par care therefore it is hard to believe that everything is being done and “advanced care planning” may signal giving up on holding physicians accountable. • Religion and spirituality, have a huge impact on the reluctance to engage in advanced care planning. The thought process raises the question of an individuals faith in God as being a “healer.” This raises doubt of the cultural context from which religious African Americans are raised. • Miseducation of what advanced care planning is meant to do and the advantages of having choices that are made in place for a terminal illness. • The myth that African Americans feel that advanced care planning takes control away from their families when it comes to end of life care. (8) Life Matters Media , “Perceptions of End Of Life Care Differ Sharply Between African Americans and White Americans” 2015, Ronald Piana

  9. African American Spiritual Experience As It Relates to Advanced Care Planning

  10. African American Spiritual Experience and Advanced Care Planning African Americans base a lot of hesitancy on participation in advanced care planning based on their belief in Gods ultimate control over their illness. This causes a reluctance in wanting to have hard discussions on prognosis and there is a preference to have all life sustaining treatment utilized. There is a thought that that if “we” accept that possibility that we or our loved one are going to die from an illness then “our” faith isn’t strong enough. The spiritual experience of “faith” in leaving everything in Gods hands comes from a rich spiritual foundation that African Americans rely on. In a study conducted by the NHPCO 70% of the participants indicated that they attend religious services a few times each month and 80 % pray for God to make a way everyday. (9) “National Health and Palliative Care Organization 2013

  11. African American Spiritual Experience and Advanced Care Planning Cont. Peter J. Paris writes “ The “spirituality” of a people refers to the animating and integrative power that constitutes the principal frame of meaning for individual and collective experiences. The spirituality of African Americans is never disembodied but is always integrally connected with the dynamic movement of life. (10) African Americans have a propensity to gravitate towards their spiritual strength when faced with illness and it becomes a driving force in what actions they will take. The idea of ones strength of ones faith as a prescription of healing negates the need for an advanced care plan. African Americans connect the “miracle” of liberation from slavery by the power of God to define for them the extent that the “miracle” of healing can occur through Gods power. (10) “Forged in the Fiery Furnace”, 2012, Diana L. Hayes pg. 29

  12. African American Spiritual Experience and Advanced Care Planning Cont. • PRAYER – Continues to be the ultimate equivalent to advanced care planning for African Americans. “What is used to bring down the walls of the strongholds of illness is the EFFECTIVE prayer “. The Greek word effectual is “energeo” which means to be active, efficient in working supplication , to be mighty in, to be operative, to put forth, and produce an effect.(11) These associated definitions can attach themselves to advanced directives and thus presents an avenue to connect to African Americans. The central scriptures from all faith traditions contain a segment of the power of prayer and leaving every situation in Gods hands. African Americans have had to rely on the power of prayer throughout the historical experiences that they have had to go through. They draw an enormous amount of faith in life circumstances through a connection to what they connect to as a higher power. The ability to bridge the power of ones spiritual experience to the planning of ones future and the power of decision making as a benefit to African Americans is what lies before society. (11) Breaking Strong Holds in the African American Family, 1984, Clarence Walker , pg 52-53

  13. Tools To Be Utilized When Addressing Advanced Care Planning For African Americans Education • Physician/Chaplain Discussions • Truthful Diagnosis • Review of All Options of Care • PULST • Five Wishes • Chaplain Involvement in Spiritual Education Trust • Cultural Awareness and Competence • Conversation • Life Review • An appreciation of the power of Spirituality from the African American perspective

  14. TOOLS: Education1. IDT CONVERSATIONS - Physicians must become comfortable with having thoughtful discussions about the definitions of medical powers of attorney, instead of abruptly ruling out certain medical decisions. A discussion of living wills and the benefits of them must take place and there needs to be time allotted for those discussions. The implementation of the “family meeting” that involves the members of the medical team (IDT) who play a part in patient care should be part of the plan of treatment. This meeting should introduce all of the components of the care team and how they have an impact on the plan of care when decisions need to be made. The lead clinician of the discussion should alternate. Consideration of allowing the Chaplain to connect advanced care planning to ones spiritual beliefs to help resolve questions of “faith” and its impact on planning will help to tap into that which African Americans are familiar. The simple act of conversations of what advanced directives represent serve to educate African Americans on what they really stand for while integrating “faith” beliefs into the conversation.

  15. Tools : Education ContinuedTruthful Diagnosis – Physicians must come to a point where they become comfortable with disclosing every aspect of a patients disease process. The lack of trust that has been a part of the dynamic of the ways African Americans view health care is due in part to the difficult conversations that physicians shy away from for various reasons. The introduction of transparent , honest diagnosis may win over the trust of African Americans and they may be more prone to plan for their future plans of care if they are well informed of all of the facts.Advanced Care Planning Documents – Very early on the introduction of available official advanced care planning documents should be introduced into the discussion.A POLST (Physicians Orders for Life Sustaining Treatment)- is a more detailed and specific DNR (Do Not Resuscitate Order). Like a DNR, this form is filled out with ones doctors and is based on ones end of life care decisionsFive Wishes- is a advanced directive. It has been described as the "living will with a heart and soul".

  16. Tools : Education ContinuedChaplain Involvement in Spiritual ConversationsThe nature of the importance of “spirituality” and “faith” to the African American community is a direct doorway for Chaplains to have a huge impact in the discussion of advanced directives. Skilled certified professional Chaplains can have the greatest influence in turning the trend around on more African Americans completing advanced directives. The skill of bringing spirituality to the forefront and the part it plays in planning for the future health care decisions is the key. The realization that the advanced care planning for the African American is largely based on “faith” and how stepping out on it looks when it comes to these conversations should fall under the Chaplains expertise. This would call for the Chaplain to be involved very early on.

  17. TOOLS : TrustCultural Awareness and Competence – Dr. Camille P. Wicher writes “that in order to make progress in advanced care planning for the African American community, that health care clinicians need to realize the cultural differences that affect the way people view health care.”(12) According to Dr. Wicher there has been an adoption of a end of life model of care to include advanced care planning that has been tailored for the white middle class. There needs to be an awareness of the cultural sensitivity of African Americans. To build a trust There needs to be a concrete effort to dispel the myths that African Americans have that is based through perception and past experiences. The only way to build trust is to build relationship and awareness through intentional “presence”.12 “Perceptions of End of Life Care Differ Sharpley Between African Americans and White Americans,” 2015, Ronald Piana pg. 2

  18. Tools: Trust ContinuedConversation – Per Dr. Sharon Williams who did a study on Advanced Care Planning and African Americans she suggests that in order for advanced care planning to be successful in the African American community, doctors must bring families into the discussion and encourage the use of medical powers of attorney. (13) These documents give control over decision making to a loved one instead of indiscriminately ruling out certain medical procedures. There must be a strong awareness and willingness to engage in the conversation of the strong role that religion plays in the lives of African Americans as it relates to their health. There must be an effective way of communication that show that physicians care about what African Americans have to say. The conversations should emphasize the impact of rapport and respect that needs to exist between the patient and the doctor. The key to the conversation is that its central theme should be the values, priorities, and values that are expressed in an open ended way that allows for the patient to take the conversation where he or she wants it to go13, North Carolina Center on Aging (http://www.aging.unc.edu/cad)

  19. Tools : Trust ContinuedLife Review – A essential component of a potential increase in African Americans and advanced care planning is the necessity to engage in life review discussions. Life reviews validate the patients experiences and learned morals, behaviors and beliefs. The engaging of physicians seeking the stories that help to shape the patient will go a long way in determining the approach of how to empower the patient in taking control. Being able to make ones own decisions based on ones experiences in life will more than likely make the conversation go more smoothly. By acknowledging the value, struggles, fears, and victories of a African American patient through life review, a level of trust tends to develop. This in turn opens the door to making sure that the patient gets the medical care that he or she wants through a advance directive.

  20. Tools : Trust ContinuedA appreciation of the power of Spirituality from the African American perspective – African Americans have long been associated with the peace that comes from their unique experience with spirituality. One of the greatest support systems for African Americans is the church or temple. For years past and present African Americans had the church as one of the only places where they could safely and freely express their sorrows, fears, and joys. The power that is received from the spirituality of African Americans is one that gives unvanquished hope in a God who is greater not only than themselves but also from any illness that seeks to end their life. The sacred beliefs of African American patients should be respected and acknowledged by Physicians. These beliefs come with an understanding that African Americans have a tendency to hold out for a “miracle” when it comes to illness. Research shows that doctors who incorporate that possibility in the discussions of advanced care planning provide a pivotal point in validating the right of a patient to feel that way. This also allows a pathway for the discussion of what a miracle looks like to the patient. Based on what is discovered through the trusting relationship there may be an opportunity to connect the miracle to planning for it.

  21. CONCLUSIONThe barriers of advanced care planning that have long established themselves within the African American community find its foundations on many fronts. From miseducation, to lack of trust, to underestimating the importance of culture and spirituality, opportunities have been missed in the health care industry of breaking down these barriers. The analysis of the research indicates that the participation of the chaplain along with the physician in more intentional conversations play an important role in overcoming the obstacles. The skillful integration of the belief systems of African Americans and its relation to future care planning through dialogue unpack the importance of God or a higher power and the role it plays in making such decisions. This can only serve to turn the trend around. A better understanding of what ones “faith” beliefs say can only facilitate trust and foster a culture of responsible planning that is in line with the patients wishes. Partnerships with pastors and religious leaders and the health care community can produce educational conduits to African American congregations about the benefits and reduction of stress on loved ones when advanced care plans are in place. The key continues to be ongoing dialogue, respect, and cultural awareness to establish a breakthrough.

  22. Sourceshttps://youtu.be/dypoYEvBfs4Why African-American seniors are less likely to use hospice – YouTubehttps://youtu.be/h8opd0WrJxYNegro Spiritual Medley - YouTubeForged in the Fiery Furnace African American Spirituality, Hayes, Diana L. Orbis Books, Maryknoll, New York 2012Breaking Strong Holds in the African American Family Strategies for Spiritual Warfare, Walker, Clarence, Zondervan Publishing House, Grand Rapids, Michigan 1996The Conversation A Revolutionary Plan For End Of Life Care, Volandes, Angelo E Bloomsbury, New York, New York 2015Public Health Post :Advanced Care Planning among African Americans: What is Strong Justin Sanders, September, 2018Life Matters Media: Overcoming Barriers to Advanced Care Planning Among African Americans Daniel Gaitan, March 2016Center for Pratical Bioethics : Advanced Care Planning for African American Faith Communities 2010

  23. SourcesPerceptions of End- of –Life Care Differ Sharpley Between African Americans and White Americans, Ronald Piana, December 2015Pew- Research, Religion & Public Life Project, “Views on- End- Of Life Medical Treatments, November 2013

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