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Palliative care unplugged

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The death of a parent is an inevitable, normal biological process. However, due to modern science we are able to delay death by days, weeks and sometimes even years. This is done by using life support techniques to circulate blood or pump oxygen into our arteries. These life support systems provide a type of artificial physiology consisting of tubes and monitors, which can eventually lead to a body void of a functioning brain. Douglas Andrews, a 56-year-old African American architect/contractor just experienced the death of his mother, and her last coherent question to him was, “Son why won’t you let me go home?”

Andrews remembers his mother as a strong African American female who had to struggle all her life as a single parent. His father died in the 1960s after working at an iron foundry on Alameda Street in Watts or Compton.

“With my father only having burial insurance and a small pension available, my mom’s life was hard. It was determined by investigators working for the foundry’s insurance company that my father’s fatal accident was due to his negligence.

Andrews remembers his mother Darlene once telling him she had to walk from Los Angeles County General Hospital to their house on 47th Street and Compton Boulevard because she did not have car fare.

This incident was indicative of his mother’s strenghth, said Andrews, who described her as a physically strong and spiritual woman who sacrificed everything for her kids.

She held at least three jobs all her life to support them—she was a seamstress, catered Jewish Bar Mitzvahs on the weekends and was also a janitor at Loyola Marymount University.”

“All of a sudden she got sick, or maybe she was sick for sometime and concealed it,” remembers Andrews.

“That’s why initially we as a family refused to talk to the hospital staff about palliative care. I thought she would make it. I thought God would save her.”

The World Health Organization defines palliative care as an approach that improves the quality of life of patients and their families when their loved one is facing the problems associated with a life-threatening illness. The problems include prevention and relief of suffering by early identification and treatment of pain and other problems including physical, psychosocial and spiritual.

Susan Downing, a palliative care nurse who helps provide relief from pain and other distressing symptoms among those who are dying. She regards death as a normal process. She said her philosophy is to neither hasten or postpone death. Rather she integrates the psychological and spiritual aspects of patient care and offers a support system to help patients live as actively as possible until death. Downing said a support system helps a family cope during a patient’s illness and with their own bereavement.

Downing believes there are many misconceptions about palliative care. She said the care is not focusing on treating a fatal illness, but more on the dignity of life in a person’s final years.

Andrews remembers his sister’s first encounter with a staff member of the palliative care unit, when his mother was at her worst in regards to her health.

“My siblings and I spent many hours in the Intensive Care Unit (ICU), often taking shifts to ensure she was not alone,” he recalled. “At times, I believed the staff overlooked the number of family members present in my mother’s room, allowing us to spend time with my mom together.”

“Spending time in the ICU, we knew the nurses, therapist, and technicians. We knew everyone with the exception of the two older female staff members who would walk by and give a warm solemn greeting as you passed them.

One day my inquiring sister introduced herself to an older female in a lab coat as she walked by my mother’s room glancing in through the open privacy curtains.

She responded with her name and informed my sister she was from palliative care. Her badge identified her as a registered nurse. She asked my sister, if the family had appointed an individual as a person of contact, and my sister wrote down the word palliative and returned to my mothers bed without identifying me as the family’s point of contact.

The next encounter my sister had with the palliative care staff, she politely informed her that my family will not need her services. The staff membeer responded she understood.”

According to Dr. Emily Rappleye, last year federal statistics revealed that while half of White Medicare beneficiaries enroll in hospice before death, only about one-third of Black beneficiaries do so. Additionally, she believes that about 40 percent of Whites over age 70 have advance care directives, compred to only 16 percent of Blacks.

An advance directive is a set of instructions a patients establishes prior to an illness.

In an article written by Dr. Rappley, a trauma surgeon who specialized in end-of-life, care elaborates on how researchers and Black physicians believe the refusal to participate in palliative care is due in large part to deep-seated suspicion of palliative care, according to the article.

According to Rappleye not only is deep-seated suspicions of the health system an issue, but sometimes simple verbiage can also lead to an African American’s rejection of palliative care.

That is because often ICU physicians will use the term “quality of life,” when describing a patient’s current use of life support machines and other life-prolonging measures. The doctor will often tell the family “this isn’t a quality life.”

Ironically, Black families may feel that it is only at the end of a loved one’s life that doctors are concerned about “a quality of life.” Subconsciously there is a belief that hospital are only concerned about how much money is being used on a dying African American.

The deeply-held suspicions of the healthcare system may have possibly been spawned by historic occurrences such as hospitals displaying “No Negroes” signs, clinics sterilizing Black women and doctors leaving Black men with syphilis untreated.

Acccording to Dr. Kimberly S. Johnson, “The infamous Tuskegee Syphilis Study of African American men” has been a qualified benchmark in the revelation of the unethical treatment and subjugation of men and women in so-called legitimate scientific research.

Another example according to Johnson, involved the art of training physicians. Medical schools have always required a constant supply of cadavers for an adequate understanding of anatomy, and the only legal source of cadavers, in the past, came from condemned convicts found guilty of heinous crimes such as homicide. Once executed, their bodies were used as medical school cadavers. However, this did not meet the demand, and as a result of shortages, African American graveyards were often robbed to provide specimens for instruction and training.

During the Victorian era, Johnson describes how African American female slaves were used in developing the process of examining women by physicians. Examining the female genitalia was a very difficult task. This was due to Victorian-era customs that frowned on exposure of a female’s body. This limited the knowledge of diseases of women in the United States, until African slaves were introduced.

Since African slaves were not considered human, practitioners were allowed to probe and perform vaginal exams, without being concerned about humiliating the female patient. Dr. James Marion Sims, performed research on African slaves during the 19th century. Sims felt using Black bodies to learn about White bodies was okay. His medical experiments on a Black female slave named Anarcha, suffering from vesicovaginal fistula (an abnormal opening between the bladder and uterus), allowed him to perform the procedure on White females, once it had been practiced.

This procedure was performed without anesthesia and in a makeshift, unsterile plantation slave hospital due to the belief that Africans were subhuman and anesthesia had no effect on them. A journal entry by Sims described the pain of a female slave, Lucy, as being extreme—”she was much prostrated, and I thought she was going to die.”

Johnson believes that African Americans having access to the internet allows Blacks easy access to a history of abuse and the philosophy that less value was and is placed on Black life by medical science.

This suspicion is also reinforced, when it comes to organ transplants and the fact that Whites receive a significant percentage of transplants in comparison to African Americans.

The question that some medical officials may ask: “How can you ask an African American family to unplug a loved one, or try and convince them to discontinue chemotherapy, when we, as a profession trained to save livese, have all these skeletons in our closet.”

Martin Luther King Jr. Hospital currently has a spiritual care department as opposed to a palliative care department, says Ivan Guerrero, manager of patient experience at Martin Luther King Jr. Community Hospital (MLK).

I’m hoping that as we grow, we can eventually start a palliative care program. However, due to the fact that some of our patients have strong religious backgrounds, it is our job to gain the trust of the community and convince our patients that African Americans and Hispanics (unnecesarily) suffer some of the most uncomfortable deaths by not trusting the health system and palliative care.”

Guerrero says there are hospitals in African American communities with palliative care departments. He notes that like other campigns, palliative care must start as a grassroot effort.

Guerrero continues, ‘Today many medical and religious leaders in the Black community have now set out to help address these concerns and provide counterviews of end-of-life discussions and palliative care and hospitals are asking black families with positive hospice experiences to share those with others and spread the word.’’

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