Dressed in Black: African Americans and End of Life Care
By Shawnee M. Daniels-Sykes, RN, PhD
(Article: Page 1 of 3)
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 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.
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