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