African American mistrust and suspicion of the USA health care delivery system is not a new phenomenon.  In fact, this population has experienced horrific and traumatizing medical and research abuse that stems back to the Antebellum Period, the period of African chattle slavery.[1] Suspicious medical abuse continues today as revealed in reports of unethical HIV/AIDS research on mostly black, Latino, and poor children in the US foster care system in New York.[2] In this essay, I recognize the important adverse effects of unethical medical treatment and the enduring mistrust and suspicions that resulted and continue to linger in the minds and hearts of many African Americans. Ever mindful of the need for forgiveness and reconciliation, I maintain that it is extremely essential that African Americans become more proactive and responsible as they encounter the health care delivery system for medical care. On the other hand, the system of health care in the United States must continue to be mindful of the need not to repeat is past social and bioethical injustices as in egregious acts against any human life.

            After the presentation of a true end of life case about Mr. Joel Mickelby (not his real name), this essay highlights issues of significant concern for end of life (pre)planning, specifically, in relationship to the Black/African American community. I will include: 1) a brief discussion about the United States being characterized as a ‘death denying culture.’ 2) A brief discussion on the extensive history of medical maltreatment and neglect of Black people that reveals why (pre)planning for end of life care is met by many with suspicion, mistrust, and/or denial. 3) A discussion on advance directive/durable power of attorney, which is an important empowerment tool for helping competent persons, or those with decisional capacity to take better control of their end of life wishes. And finally, 4), a presentation highlighting some key theological assumptions that undergird end of life care (pre)planning.

            On November 14, 2006, Mr. Joel Mickelby, a 73 year old African American Catholic retiree, was admitted to a major medical center in Minnesota for a left knee replacement procedure. Fifteen years prior, Mr. Mickelby had a heart transplant due to congestive heart disease, two heart attacks, quadruple bypass surgery, and longstanding hypertension. During the knee replacement surgery, he experienced a hypotensive episode or bradycardia, which is a sudden extreme low drop in the heart rate. Mr. Mickelby was warned that this could be a side effect from the knee surgery, resulting in organ system failure and ultimately death. Because he had become very frustrated and impatient about living with chronic severe knee pain, Mr. Mickelby insisted on the surgery and signed the informed consent papers for the procedure. The knee replacement operation was successful. However, while he was in the hospital recovering from it, his health care providers observed, through blood work, signs of liver and kidney failure. Mr. Mickelby was taken to the medical center’s cardiac intensive care unit for closer observation. Eventually, while in the unit, he was put on a ventilator, had a Foley catheter inserted which consistently showed little urine output, had multiple blood transfusions and on several occasions underwent renal dialysis. He received pain medicines, antibiotics, and had artificial nutrition and hydration through a nasogastric tube. With these efforts to prolong his life, he remained a full code status. Instead of getting better he gradually became sicker and sicker.

            Along with his wife, Mrs. Mabeline Mickelby, who has a history of Alzheimer’s disease, Mr. Mickelby has eight adult children, 20 grandchildren, nine great grandchildren and three great great grandchildren. Although the family is very closely bonded, the thought of discussing end of life plans had never occurred to them. Mr. Mickelby did not have a durable power of attorney or health care agent assigned for someone to make decisions on his behalf if he was to become mentally incompetent. The fact that he was a status post health transplant patient, one would have thought that at least someone knew of his end of life wishes or that an advance directive or even a living will was completed and noted in his medical chart.

            Eventually, Mr. Mickelby did become incompetent and become very agitated and constantly attempted to pull the tubes out of his mouth and nose. To control his attempts at pulling the tubes out, the primary care nurse was ordered by the cardiologist, Dr. Jon Zioski (not his real name), to put Mr. Mickelby in wrist restraints.

            Mr. Mickelby spent the last six weeks of life in the cardiac intensive care unit in the dying process, which was characterized by excruciating pain, restlessness, and obvious suffering. There were times when he managed to groan what sounded like “help me!” At the family consultation with the medical staff, Dr. Zioski told them that Mr. Mickelby was showing some improvement. The encouraged family members, then, requested, in fact, demanded that everything continue to be done to save or prolong his life. Everyone present at the consultation agreed that Mrs. Mickelby should be the durable power of attorney and the eldest daughter of the family, Natasha, would be the alternate/assistant to her mother. Neither Mrs. Mickelby nor Natasha was emotionally or rationally capable of making the decision to let Mr. Mickelby die. They were emotionally distraught by the entire situation. Instead the machines made the ultimate decision; they began to malfunction by uncontrolled beeping, and the tubes began to clog, loosen, and come out of his orifices. The malfunctioning machines got the family’s attention. They could understand now that Mr. Mickelby’s care was medically futile; that in actuality, he was not improving. He died in the cardiac intensive care united on January 10, 2007, nearly three months after his hospital admission for knee surgery and a day after his 74^th birthday. He died of complications related to his heart, which caused major organ system failure.

            With the advent of certain pain medicines like morphine, or medical equipment like respirators or ventilators, or procedures like renal dialysis, and artificial nutrition and hydration, physicians and other health care professionals have the ability to prolong life or prolong the dying process. Persons with certain debilitating and/or terminal diseases like incurable cancers, or injuries, especially to the brain, resulting in brain death, and cardiac hypotensive episodes like Mr. Mickelby’s, may be able to live longer today than in the past. Advances in science, medicine, and technology, however, raise bioethical concerns related to medical futility or the need for an order such as do not resuscitate (DNR), or they provoke questions about what is meant by a quality of life? Furthermore, much confusion emerges over what is considered ordinary medical treatment and what is extraordinary medical treatment. Concerns surface about whether to withhold or withdraw artificial nutrition and hydration (ANH) for fear of ‘starving the ailing love one to death.’ For many, fears looms large about going against Catholic Church teaching regarding euthanasia or mercy killing, or assisted suicide. Even without intending euthanasia or mercy killing, many people are reluctant to let go and let God be in charge of when death happens.

Death Denying Culture in the United States of America

            In the US, we live in a ‘death denying culture’; there is much fear around the issue of death. Example phrases such as: departed from this life, passed over, pass, crossed over, expired, gone to a better place, gone to God, gone home, giving up the ghost, crocked, kicked the bucket, pushing up the daises, and bit the dust, illuminate how we bypass using the actual words died, death, dying and instead refer to metaphors or images. These words and phrases can help to shield us from having to face the unknown or the mystery undergirding the dying process and our ultimate mortality. The fact that our loved one is gone forever, never to return in the ways that we remember him/her is a huge unknown for us who are left behind on earth. For human beings, death ultimately remains a mystery and many would rather not discuss it; for many African Americans, discussing death is fraught with fear and anxiety, because of the memories and narratives revealing the extensive and tragic history of medical neglect and abuse brought on by certain health care professionals and medical researchers. This has led to black mistrust of the health care system and hesitations around end of life care (pre)planning.

Black Mistrust of the Health Care System and End of Life (Pre) Planning

            Reportedly, untimely and suspicious deaths of numerous African American are widely known about in this population.[3] Hence, many black Americans involved in the US Health Care system are provoked by an overwhelming suspicion and a lack of trust.[4] Historical, political, and socio-cultural factors undergird much of their emotional reactions or responses. For example, in the US Constitution on slavery (Article 1, Section 2) black slaves were considered 3/5^th of a person. This partial personhood status denoted black inferiority, giving white medical scientists, physicians, among others, permission to view African American bodies not only as mere objects, but also as a rich resource for experimentation to advance scientific and medical knowledge.[5] Faulty scientific theories resulting from this new found knowledge substantiated deep-seated racial biases against African Americans. For example, blacks were believed to have smaller brains which meant that they were unable to achieve academically, or to think logically and therefore, expendable. Large genitals of black males denoted their fertility ability; they were studs used to increase the African slave population to be manipulated and destroyed as needed. The Father of Gynecology, Dr. J. Marion Sims, experimented on African female slaves with vaginal fistulas to perfect his vaginal-vesicular surgical procedure.[6] In essence, by focusing on the anatomical and physiological features of black people, white medical research scientists and physicians for centuries treated this so-called inferior population anyway they deemed essential for executing their medical treatments and/or research protocols and thus, gained fame and fortune.[7]

            This inhumane way of relating to African Americans continued through the post-Antebellum Period, the Reconstruction Era and Jim Crow Periods. Even though the Civil Rights Act of 1964 had been passed, the public disclosure of the Tuskegee Syphilis Study in Macon County Alabama in 1972 caused a huge scandal, furthering the deep-seated mistrust and conspiracy theories that many black people continue to hold today against the institutions of health care and research. In the Tuskegee Syphilis Study, for example, 400 poor black males were enrolled in an experiment conducted by the United States Public Health Service that researched the progression of untreated syphilis from 1932-1972.

            Although penicillin was discovered in the 1940s, many years prior to the end of this study, this antibiotic was never used to treat these men who contracted syphilis. As a result of this and many other experiments on human beings,[8] many black people are keenly aware of the extensive amount of medical neglect and maltreatment that has occurred and many have developed a deep sense of mistrust of the health care delivery system, including medical researchers and health care providers. Their skepticism remains alive and well today and is perpetuated in suspicions about the origins of HIV/AIDS and the resulting pandemic particularly in African and among African Americans, and well as other public health issues like gun violence and the proliferation of illegal drugs that have infiltrated African American communities. Many believe that these public health concerns are planned efforts by the federal and local governments or people in power to annihilate people of African descent.

            Many black people fear that they will not receive all that is necessary from the health care system to recover from serious illnesses. Many believe that health care providers do not care about them and would rather see them dead, anyway. Others have become frustrated with navigating and negotiating the very complicated US health care system and have become despondent about receiving the necessary help that they need for a quality of life. Many are cognizant about major health care issues adversely effecting African Americans such as: the vast number who are medically uninsured and underinsured, the black high morbidity and morality rates related to HIV/AIDS and different types of cancers, cardiovascular diseases, infants, to name a few.  To further illustrate the gravity of social and bioethical injustice, the January 2, 2006 Kaiser Daily Report on racial disparities in the treatment of lung cancer observes that, “[b]lack patients with treatable lung cancer are less likely to undergo comprehensive diagnostic procedures and surgery as white patients with the same severity of the disease, regardless of whether they have similar access to specialized medical care.”[9] The 2003 report of the Institute of Medicine resonates with this issues as it confirms that even with health insurance, African Americans are still not provided with appropriate screenings or diagnostics to diagnose, for example, heart disease, various types of cancers, HIV/AIDS or other chronic debilitating diseases.[10] Arguably, these health care concerns sustain black mistrust of the health care system and make end of life care (pre)planning a formidable challenge. It is no wonder that many believe that those in the health care delivery system have conspired against blacks anyway; for that primary reason the thought is that no opportunity should be given to take away the life of blacks prematurely by letting health care providers know about their end of life wishes.[11] The memory of medical disrespect for black life lives on from generation to generation.

            End of life (pre) planning occurs in relationship to health care, which may not resonate well for those who mistrust or are suspicious of the system in which they find themselves. However, one can argue that end of life (pre) planning can be viewed as a positive way for competent persons or persons with decisional capacity to exercise their right to determine what they desire most if one day they are unable to make their own medical-decisions known. The advance directive/durable power of attorney or health care agent is employed to facilitate one’s end of life (pre) planning process; it is only activated when the patient is incompetent or lacks decisional capacity and there is an urgent need to make decisions about end of life medical care.

Advance Directive/Durable Power of Attorney or Health Care Agent

            For the purpose of this essay, only the advance directive/durable power of attorney or health care agent will be discussed in detail. The living will, another type of advance directive, is an instruction or treatment directive that is a pact or covenantal agreement between the patient and the physician.[12] The advance directive/durable power of attorney, a formal agreement about end of life medical care, is used by a person/patient in dialogue with her/his durable power of attorney or health care agent.[13] The expectation is that the health care agent is reliable and capable—emotionally, spiritually, and rationally—of following the medical directive or wishes of the person completing the advance directive. The person/patient freely chooses to make medical choices about how she/he would want end of life care to be handled and trusts that her/his wishes will be followed accordingly.[14]

            In the (pre) planning process, a healthy person or competent patient, unencumbered by emotional, physical, or spiritual trials and tribulations, must clearly understand her/his decisions for end of life care and communicate them in writing. This includes preferences for continual use of a ventilator, artificial nutrition and hydration, pacemaker, and/or renal dialysis, especially if there are no signs of significant medical improvement. The health care agent must understand the meaning of medical futility, or that medical and nursing interventions are not working for the person’s/patient’s benefit, but instead have become excessively burdensome, risky, and costly. The person/patient completing the advance directive is free to charge the health care agent with taking a ‘do not resuscitate’ (DNR) stance or withhold or withdraw life sustaining medical treatment when that treatment is non-beneficial, or that the risk outweigh the benefits. Further, the person/patient may convey to her/his health care agent that she/he does not want to die in pain and that analgesics are fine to administer, while understanding that increasing certain pain medications, like morphine, to lessen the pain slows down the respiratory rate to the point of possibly causes death as a side effect. Other medical decisions that the person/patient may freely choose include: total corpse, organ and/or tissue donation to medical research, palliative care, hospice care in the home or in a skilled cared nursing facility, among others. Here again, the health care agent has an extremely important role to play as the lead advocate in honoring the person’s/patient’s end of life care and wishes.

            The advance directive/durable power of attorney or health care agent form also requires two witnesses and annual updates. It is important to have multiple copies of this  completed document to share with health care providers, family members, friends, spiritual directors, to name a few. Significant others should know where copies of the advance directive are kept. In essence, communication is a very important part of end of life (pre) planning and as challenging as this might be, perhaps, broaching the topic in light of the paschal mystery is a great place to start. For example, African American Catholic Christians believe that the paschal mystery is about Jesus Christ who is not only human and divine but he was also crucified, died, and rose again on the third day. They can relate Jesus’ paschal mystery to the mystery of human life past, present, and future.[15]

Paschal Mystery

            For African chattle slaves, life proved to be extremely harsh and dehumanizing. Yet, many grasped the idea that someone greater than human beings, i.e., Jesus Christ came to show everyone what it meant to be liberated from oppression. “Black slaves’ faith in the coming justice of God [in the person of Jesus] was the chief reason why they could hold themselves together and sometimes fight back, even though the odds were against them.”[16] They could fight back even though they experienced morally evil people in the world who showed them no compassion and love. Although they endured centuries of crucifixion and death by slave masters and oppressors, many slaves found hope and freedom in Jesus’ story, especially, the story of resurrection.[17] Inspired by this outstanding message of hope in the resurrection, these Africans in America trusted that they could also break the chains of slavery, bondage, captivity, pain, and suffering, just like Jesus did on Easter Sunday morning. This same hope encapsulated in Jesus’ resurrection story remains a key aspect of black spiritual and black theology[18]

            Hence, the end of life stories of Jesus Christ (John 19:16-20; 1-9; Luke 23:26-56; 1-12; Mark 15: 21-47; 16: 1-7), Jairus Daughter (Mark 5:21-43), and Lazarus (John 11: 38-44) in the Christian Scriptures can assure African Americans today that with death there is also resurrection. For example in John 11:38-44, we find this story about Lazarus:

Again feeling very upset, Jesus came to the tomb. It was a cave with a large stone covering the entrance. Jesus said, “move the stone away.” Martha, the sister of the dead man said, “but Lord, it has been four days since he died. There will be a bad smell.” Then Jesus said to her, “didn’t I tell you that if you believed you would see the glory of God?” So they moved the stone away from the entrance. Then Jesus looked up and said, “Father, I thank you that you heard me. I know that you always hear me, but I said these things because of the people around me. I want them to believe that you sent me.” After Jesus said this, he cried out in a loud voice, “Lazarus come out!” The dead man came out, his hands and feet wrapped with pieces of cloth and a cloth around his face. Jesus said to them, “take the cloth off of him and let him go.”

I maintain that Biblical stories that speak about the paschal mystery of our life, our death, and our resurrection are good sources for us to pray with and reflect on when faced with end of life decisions. As we grow in our understanding that our faith journeys on earth are suppose to lead us to the eternal life and that we will rise again, we can make the following theological assumptions:

• That the sick and dying can be assured of Jesus Christ’s understanding and comfort, offered during the end of life process. Though not something that we as human beings necessarily desire, suffering, pain, and sickness, I believe, can bring us closer to God.
• That the sacrament of the sick acknowledges or makes real the finiteness of human life and that it helps us to be reconciled and prepared to transition to the eternal life with God.
• That decision-making at the end of life is difficult and challenging. Important decisions about our lives are best made prior to being in the process of dying. For example, discussions on the person’s/patient’s end of life wishes could be ritualized in the context of a prayer service, theological reflection in faith sharing groups, and/or singing and listening to the lyrics of black spirituals that speak of the eternal life—going to heaven. Also discussing black folklore, poetry, or narratives that speak of life and death might be a way to deal with the challenges of end of life decision-making.
• That no one health care decision or response can apply to all circumstances or to all human beings. Decisions are made within the context of relationships with others as one relies on God and seeks advice from family members, friends, spiritual directors, mentors, community members, among others. We are called to be in social solidarity with each other—we are our sisters’ and brothers’ keeper and are, therefore, never alone in this process.
• That we must constantly seek to be good stewards of limited, scarce, and costly health care resources that are always gifts from God; we must learn to be good neighbors to each other, mindful of the next person and her/his needs for health care resources and end of life care. Health care providers and medical technology are not God Almighty; only God can do everything to prolong life or prolong the dying process if it is a part of God’s plan for the patient/person.
• That we understand that the fundamental anthropological principle of Catholic Social Teaching is human dignity.[19] Human dignity implies that God created all human life and therefore, life is sacred from conception until death. Human life results in living; death results from dying. We must uphold end of life (pre) planning as a very sacred act that must ultimately lead to death with dignity.

Summary and Conclusion

            In summary and conclusion, just as human life implies living, human life also means that death is inevitable. We live in USA society, which can be characterized as a ‘death denying culture,’ where people would rather not discuss or face their immortality or finiteness. A fundamental understanding of the paschal mystery of Jesus Christ can serve as a constant reminder of the mystery of life and the mystery of death, which comprise the human condition.

            The extensive history of medical neglect, abuse, and maltreatment of African Americans has resulted in many who mistrust and are suspicious about the health care delivery system. It should be no surprise that they experience hesitations and reluctances, especially, when asked to make their end of life plans known to the health care delivery system in general and health care providers in particular. The 2006 Kaiser Daily Report reporting that black patients with treatable lung cancer are less likely to receive comprehensive diagnostic procedures and surgery than whites does not assist African Americans in regaining deeper trust in the health care system.

            Along with forgiveness and reconciliation about past injustices in health care, African Americans must be more proactive and responsible about end of life (pre) planning, while trusting in God’s ultimate plan for human life. Growth is needed in letting go and letting God take complete charge of human life. As harsh as this may sound, this attitude of letting go means not demanding continual use medical technology such as respirators, artificial nutrition and hydration and renal dialysis to prolong the dying process of a significant other. At times, the continual use of medical technology might do more harm to the patient then good. Rather, reliance on the advance directive/durable power of attorney/health care agent can serve as an important empowering resource for African Americans to employ. In this way, it is presumed that each person has freely made health care choices for her/his end of life care, while having been in dialogue with and designated a capable health care agent first, followed by sharing one’s wishes with interested significant others.

             And may Mr. Mickelby rest in the peace and love of Jesus Christ. Thank you!

A School Sister of Notre Dame (SSND), Shawnee M. Daniels-Sykes, RN, PhD, is an Assistant Professor of Theological Ethics at Mount Mary College, Milwaukee, Wisconsin.