African Americans Are Encouraged to Put Final Wishes in Writing
by Clarene Mitchell, Community Liaison–VITAS Innovative Hospice Care
It is vitally important that individuals of all ages make their end-of-life care wishes clear, in writing and legally. This helps to avoid misunderstandings when critical medical situations arise and ensures that the wishes of a loved one are honored. Unfortunately this occurs less frequently with African Americans. Perhaps your family, or a family you know, has been faced with having to make medical decisions on the spot during a time of crisis for a loved one without knowing their wishes. Perhaps family members could not come to a consensus on what should or should not be done. As a result, the loved one perchance was treated in a way that went against their wishes. Family members can often become estranged because they disagree on treatment options. National Healthcare Decision Day, April 16th, focuses on the importance of putting one’s final wishes in writing to help avoid complicated end-of-life situations.
Simply put, Advance Directives clearly let others know your preferences for the kind of medical intervention you would or would not want. The Advance Directive also allows you to identify those who you trust to protect your wishes. Medical matters to consider include if you want to be on life support, be tube fed, etc. Key terms to understand with Advance Directives are:
• Living Will: outlines personal choices about medical treatment should the individual be unable to communicate.
• Medical Power of Attorney: appoints someone the individual trusts to make decisions about medical care once an individual can no longer make decisions for themselves.
• Do Not Resuscitate Order (DNR): is a type of advance directive which indicates that a patient should not be offered CPR or other lifesaving measures in the event of cardiac arrest or other medical emergencies. Typically, a DNR is requested by or for a patient who is terminally ill, to avoid potentially painful and invasive procedures.
Advance Directives is an issue of importance for African Americans because the community is less likely to have them in place. This is a practice that is not in its best interest because the African American community has extremely high morbidity and mortality rates. “Many studies have documented that African Americans use palliative care and hospice services at a significantly lower rate than do white Americans” stated Dr. Natasha Travis, Immediate Past President of the Cream City Medical Society and Assistant Professor of Medicine – General Internal Medicine at the Medical College of Wisconsin. “This may be due to a number of factors, however, lack of awareness and misconceptions about hospice may contribute to low rates of participation in early end of life care planning among African Americans.”
End-of-life discussions in the African American community is a bitter pill to swallow, regardless if the conversation is on hospice care or advance directives, yet this is a very necessary matter that should not e avoided. When the conversations and necessary pre-planning occur, individuals who are faced with chronic and terminal illnesses can be assured that their final wishes will be granted and they actually give their loved ones a gift by sparing them from the agonizing decision of what to do.
There are varying dynamics that contribute to why African Americans are less likely to have completed Advance Directives. In general, discussions regarding death, dying and illness are influenced heavily by one’s spiritual beliefs. This is especially true for African Americans who tend to leave these matters in the hands of God and utilize prayer to get through the situation. From a historical perspective, African Americans have a long-standing distrust of health care systems. Racism and historic incidences of medical and scientific malpractice have contributed to this distrust. This mistrust leaves the community feeling powerless and unable to believe medical providers have their best interests in mind. For a community that may feel their daily existence is a struggle, it is hard to comprehend that viable options are available at the end-of-life that can provide quality to their final days.
Understandably, the thought of being so ill that you can no longer articulate your wishes can be unbearable. Having your Advance Directive completed before you are ill makes the process easier because you and your family are not under that stress of dealing with a critical illness. This allows for calm, clear headed decisions without the influence of extreme emotions. The appropriate time to complete the documents is not when you have a critical injury, a debilitating illness, and/or if you are not responding to lifesaving treatments. You must take action when you are truly able to act on your own behalf, so that you are not in the midst of a crisis.
Preparing your Advance Directives is just the first step to ensuring your final wishes are honored at the time of need. It is important that you also discuss your wishes with your family members. Have a family meeting and discuss your wishes in a calm manner. Regardless of the timing, these conversations are always hard to have. But the longer you wait to do so, the more likely the conversation will not have occurred prior to your need. It is advisable to have this discussion on a regular basis, perhaps when family members are gathered for a holiday or a family event like a reunion. You also need to have the conversation with your physician, pastor, and other persons who are important to you. Copies of the Advance Directives should be put in your medical records and with your Power of Attorneys (POAs) for Healthcare. It is also important to have the document with you if you go into the hospital and when you travel.
African Americans do not have to be powerless when it comes to end-of-life matters. The African American community must act on its own behalf and put their final wishes in writing to make sure that their voice is heard until they take their last breath. This practice must be encouraged more by faith-based leaders, physicians and community elders. Please take advantage of these Advance Directives resources so that you are an advocate for yourself, even at the end-of-life:
FIVE WISHES – This is a very user-friendly booklet that helps you express how you want to be treated if you are seriously ill and unable to speak for yourself. It deals with all of a person’s needs: medical, personal, emotional and spiritual. The booklet can be ordered at: http://www.agingwithdignity.org/five-wishes.php <http://mailhost.vitas.com/exchweb/bin/redir.asp?URL=http://www.agingwithdignity.org/five-wishes.php>
Caring Conversations by the Center for Practical Bioethics: Guidance at the Crossroads of Decision, the full document can be downloaded from http://www.practicalbioethics.org/FileUploads/FINAL.Caring%20Conversations%20Workbook%202010.pdf<http://mailhost.vitas.com/e-xchweb/bin/redir.asp?URL=http://www.practicalbioethics.org/FileUploads/FINAL.Caring%2520Conversations%2520Workbook%25202010.pdf> VITAS Innovative Hospice Care© can provide Advance Directives workshops in the community upon request. If interested, please feel free to contact Clarene Mitchell, VITAS’ Community Liaison, by phone at 414-257-2600 or by email at [email protected] Referrals for hospice care can made 24 hours a day at 1.800.93.VITAS (8427).