Black Catholic Featured Article ~ { Print Version }
The National Black Catholic Congress
www.nbccongress.org

Dressed in Black: African Americans and End of Life Care
By Shawnee M. Daniels-Sykes, RN, PhD

With the advent of certain pain medicines like morphine, or medical equipment like respirators or ventilators, or procedures like kidney dialysis, medical physicians and other health care professionals have the ability to prolong life or prolong death. Persons with certain debilitating and/or terminal diseases or injuries, especially, to the central nervous system, may be able to live longer today. Advances in science and technology, however, raise bioethical concerns related to medical futility or an order such as do not resuscitate (DNR). Concern about withholding or withdrawing artificial nutrition and hydration (ANH) for fear of 'starving the ailing loved one to death' is a major one. There remains much confusion over what is considered ordinary medical treatment and what is extraordinary medical treatment. Most health care professionals do not want to be accused of euthanasia or mercy killing, or assisted suicide.

The purpose of this essay is to discuss the multiple facets of end of life care (pre)planning, specifically, in relationship to the Black community. 1.) Given that discussions on end of life care are mired with controversy, in fitting with the paschal mystery (e.g., the life, death, and resurrection) of Jesus Christ, there are certain assumptions that need to be noted. 2) A brief discussion about the United States characterized as a 'death denying culture' is important to this topic and will be presented. 3) Given the extensive history of medical maltreatment and neglect of Black people, the topic of (pre)planning for end of life care maybe met with great suspicion by many; it still needs to be discussed. 4) Finally, because the advance directive/durable power of attorney is an important tool for helping competent persons, or those with decisional capacity to take better control of their end of life decisions, this particular advance directive will be further expounded upon.

Grounding this discussion in the paschal mystery of Jesus Christ reminds us that human beings are finite; we will really die someday, but like Jesus, we will also rise. (John 19:1-42; 20:1-18). The concept of the paschal mystery is pregnant with many assumptions to help us make sense of it all, especially in light of the meaning of life and the meaning of death.

Assumptions

• Jesus Christ experienced pain, suffering, death, and resurrection. It is because of his model that the sick and dying can be assured of Christ's understanding and comfort, offered during this end of life process. Though not something that we as human beings necessarily desire, suffering, pain, and sickness can bring us closer to God.
• Decision-making at the end of life is difficult and challenging. It is best attempted prior to being in the process of dying. Thoughts about our humanness, finitude, illness, death, and advance care (pre)planning should occur prior to life threatening episodes or crises.
• 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, spiritual directors, community members, among others.
• Excessively burdensome treatments which are not beneficial to enhancing the quality of life of the patient need not be accepted. Excessively burdensome treatments are those that have severe side effects, those that have high risks and high costs, or treatments that will cause a grave inconvenience to family, friends, or society. Non-beneficial medical treatments are those that will not result in a resolution to the disease or complications from the disease. They are medically futile and can be withheld or withdrawn. Withholding or withdrawing such treatment is neither active euthanasia nor suicide.
• As all human life is sacred and is a wonderful gift from God, human life results in living. Death results from dying, while upholding death with dignity.

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 phases such as: departed from this life, passed over, 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 refer to metaphors. These phrases shield us from having to face the unknown or the mystery undergirding the dying process and our ultimate death. The fact that our loved one is gone forever, never to return in the way that we remember him/her is a huge unknown for us who are left behind mourning the loss. For human beings, death remains a mystery and many would rather not discuss it. For many, facing death is fraught with a lack of trust and fear, especially, if it is placed in the context of the US health care system, including end of life care (pre)planning.

Black Mistrust of the Health Care System and End of Life Care

Viewing Black Americans in the context of the US Health Care system, for many, it evokes overwhelming suspicion and a lack of trust. Historical, political, and socio-cultural factors undergird these emotional reactions. For example, in the US Constitution on slavery (Article 1, Section 2), Black slaves were considered 3/5th that of White people. Partial personhood of Black people denoted Black inferiority, giving medical scientists, physicians, among others, permission to view African Americans not only as mere objects, but also as a rich resource for experimentation to advance scientific knowledge. Faulty scientific theory resulted from this new knowledge and substantiated deep-seated biases against African Americans. Focusing on the anatomical and physiological features of Black people, medical research scientists and physicians treated this population anyway they deemed essential for executing their research protocols. This way of relating to African Americans continued throughout the Reconstruction Era and Jim Crow Periods, culminating in the public disclosure of the Tuskegee Syphilis Study in Macon County Alabama that lasted from 1932 to 1972. As a result of this study and others, African Americans internalized the medical neglect and maltreatment, and have developed a deep sense of mistrust of the health care system, including medical researchers and health care providers. These affects remain alive and well today.

For example, many Black people fear that they will not get all that is necessary for them from the heath care system to recover from a serious illness. Many fear that health care professionals do not care about their physical, social, or psychological well-being, and would rather see them dead. Many have become frustrated with navigating the health care system, which is in grave need of reform, and have become despondent about receiving the necessary help that they need to regain their health. Many are cognizant about major health care issues affecting African Americans such as: Black health disparity, Black high morbidity and mortality rates, and the epidemic of HIV/AIDS in Black communities. Arguably, these affects sustain the issue of Black mistrust, and make end of life care (pre)planning a formidable challenge and undertaking.

Advance care (pre)planning for end of life care occurs in the context of the health care system, which does not fit well for those who mistrust or are suspicious of this system in the first place. However, advance care (pre) planning for end of life care may be viewed as a positive way for competent persons or persons with decisional capacity to determine what they desire most if one day they are unable to make their own medical-decisions.

Advance Directive/Durable Power of Attorney or Health Care Agent

For the purpose of this essay and the space allotted, only the advance directive/durable power of attorney or health care agent will be discussed in detail. The living will is another form of advance directive that is completed within the doctor-patient relationship. The advance directive, a formal agreement about end of life care, is used by a person in conjunction with or dialogue with her/his durable power of attorney. The expectation is that the durable power of attorney or health care agent is really capable of following the medical directives of the person completing the advance directive. That person freely chooses to make medical choices about how she/he wants end of life care to be handled and trusts that they will be followed accordingly.

In the (pre)planning process, a healthy person, unencumbered by emotional, physical, or spiritual trials and tribulations, must clearly understand his/her decisions for end of life care and convey clearly her/his wants or desires to a chosen health care agent. Together with a durable power of attorney, or health care agent, the person is able to state, for example, that she/he does not want to be hooked up to a ventilator or respirator for an extended period of time, especially if she/he shows no signs of gradual improvement. The person understands the meaning of medical futility, or that medical and nursing interventions are not working for her/his benefit and have become excessively burdensome and costly. She/he is free to charge the health care agent with taking a 'do not resuscitate' (DNR) position or to withhold or withdraw life sustaining medical treatment when treatment is non-beneficial. Further, the person may convey to her/his health care agent that, he/she does not want to die in pain, while noting that increasing certain pain medicines to lessen the pain slows the respiratory rate to the point of causing death as a side effect. Other medical decisions that the person may freely choose include: organ and tissue donation, palliative care, hospice care, among others. Here again, the health care agent has an extremely important role to play as the lead advocate for a person's end of life care.

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 your health care providers, family members, friends, spiritual directors, to name a few. Significant others should know where a copy of the advance directive is kept.

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

The extensive history of medical neglect, abuse, and maltreatment of African Americans results in their continual mistrust and suspicion toward the health care system. It should be no surprise that they experience particular challenges, especially, when dealing with end of life issues. On a more positive note, the advance directive/durable power of attorney or health care agent can be viewed as an empowering tool for African Americans, as each person freely makes health care choices for her/his end of life care in dialogue with a health care agent.

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