4/29/2019 Sheri Bartlett Browne, PhD, BCC Webinar presentation for - PDF document

4/29/2019 Sheri Bartlett Browne, PhD, BCC Webinar presentation for the National Association of Catholic Chaplains, May 2019 1 God-who-disrupts-our-neat-boundaries, you whose truth is larger than we are by your presence and through your Spirit enlarge our minds and hearts so that we may seek truth, catch a glimpse of truth, hear truth, learn truth, tell truth, live truth – your truth of the way of full life for all. Michael Jagessar composed for Racial Justice Sunday, 2019 2  analyze the historical and cultural roots of racial disparities in health care  identify connections between Black Americans’ end-of-life choices and racial disparities  gain new knowledge about the Catholic Social Tradition  make connections between a persistent problem in health care and how Catholic doctrine can inform solutions to this problem NACC Certification Competencies: ITP2.1, ITP4, ITP4.1, PPS3, OL4 3 1

4/29/2019 I. Contextualizing Oppression “The past is never dead. It’s not even past.” William Faulkner, Requiem for a Nun (1951) Source: National Equity Project https://nationalequityproject.org/resources 4 •3,600 lynchings slavery slavery slavery slavery 1884-1914 1640 1640- -1865 1865 1640 1640 - - 1865 1865 • Plessy v. Ferguson 1896-1954 Jim Crow Jim Crow Jim Crow Jim Crow •Racially restrictive segregation segregation segregation segregation housing covenants 1880s- 1880s -1964 1964 1926-1968 1880s 1880s - - 1964 1964 political political political political •Poll taxes, grandfather disfranchisement disfranchisement disfranchisement disfranchisement clauses, literacy tests 1640 1640 1640 1640- - - -1965 1965 1965 1965 1880s-1965 5 white black Source: Pew Research Center, “Race in America 2019” 6 2

4/29/2019 “We’ve been betrayed by the political process, betrayed by the medical process, betrayed by each and every process in America, and it’s all based on racism. That distrust affects our entire personality in a great many ways.” --Black focus group participant (NHPCO, 2008) 7 U.S. Black population by U.S. Black population by region, 2016 region, 2016 U.S. Black U.S. Black population by population by region, 2016 region, 2016 17% Northeast Midwest 55% 18% West South 10% 8 25% 57% 9 3

4/29/2019 II. Medical Mistrust and Healthcare Disparities “I sat in the driver’s license bureau for about 45 minutes and every Black person that was in there, they’d be like, ‘Would you like to be an organ donor?’ And every Black person said no. And every person of another race they asked was like, ‘Yeah, no problem.’ And I immediately said no. And this thing in my head was telling me they will misuse my organs. I don’t even know why I was so emotional.” --Black focus group participant (Scharff, 2010) 10 Tuskegee Tuskegee Study of Untreated Syphilis in the Negro Tuskegee Tuskegee Study of Untreated Syphilis in the Negro Study of Untreated Syphilis in the Negro Male Study of Untreated Syphilis in the Negro Male (1932 Male Male (1932 (1932 (1932- - - -1972) 1972) 1972) 1972) “Just that awareness [about Tuskegee] is enough to stand up generation after generation.” -- Black focus group participant (Scharff, 2010) 11 clinical trials on young black males  neurosurgery to investigate hyperactivity  studies of the effects of Fenfluramine coerced sterilization for women  North Carolina, Virginia, Indiana, California, Washington “The “The targets of that targets of that [eugenics] board’s [eugenics] board’s 45 45- -year reign, from year reign, from “The “The targets of that targets of that [eugenics] board’s [eugenics] board’s 45 45 - - year reign, from year reign, from 1929 to 1929 1929 1929 to to 1974 to 1974 1974, were disproportionately black and female, 1974 , were disproportionately black and female, , were disproportionately black and female, , were disproportionately black and female, and and and and almost universally almost universally almost universally almost universally poor” poor” poor” poor” (Carmon, 2014). 12 4

4/29/2019 “… a particular type of health difference that is closely linked with economic, social, or environmental disadvantage. Health disparities adversely affect groups of people who have systematically experienced greater social or economic obstacles to health based on their racial or ethnic group … or other characteristics historically linked to discrimination or exclusion.” 13 59% The percentage of blacks who believe they are treated less fairly than whites when seeking medical treatment Source: Pew Research Center, “Race in America 2019” 14 Black Americans are less likely to receive routine medical procedures and experience lower quality of healthcare services. Lower rates of insured adults  Fewer adults with a usual source of healthcare  More likely to delay routine exams and dental  care because of cost 15 5

4/29/2019 Even when insurance status, income, age, and severity of conditions are comparable, providers underutilize: providers underutilize providers underutilize providers underutilize  Kidney transplantation  Noninvasive care for cerebral injury  Cardiac catheterization  Surgery for early-stage lung cancer  Appropriate pain management for chronic and terminal illness 16 Black Americans die from treatable and preventable illnesses with more frequency than other ethnic groups. The maternal mortality rate for Black women is nearly 4 times that of White women. The Black infant mortality rate is nearly twice as high (11.3/1,000) as the overall national rate (5.9/1,000). 17 III. End-of-life care as it intersects with history, culture, and medical systems. “People are people. The fact that your color is different, the fact that your culture is different should not have anything to do with the realities of life and death. In the same manner, they [health care providers] need to figure out how Black people deal differently with issues of death and dying.” -- Black focus group participant (Waters, 2001) 18 6

4/29/2019 Longevity is valued more than “quality”  Endurance of discrimination and disparities  Persistence through pain and suffering  Chronic illness is un- and undertreated Survival is the victory  Life expectancy is shorter  Media - Black lives portrayed as short and impoverished - Black death as chaotic and violent 19 Percentage of terminally ill patients who desire Percentage of terminally ill patients who desire Percentage of terminally ill patients who desire Percentage of terminally ill patients who desire intensive life intensive life- intensive life intensive life -sustaining treatment - - sustaining treatment sustaining treatment sustaining treatment Black White CPR 42 27 Major Surgery 61 50 Mechanical ventilation 34 17 dialysis 67 32 20 No such thing as “unnecessary care.” The perception (and the reality?) is that they will receive no care at all. 21 7

4/29/2019 “I’m concerned about White people making decisions for me because I know the decisions that they’ve made over the last 300 years concerning Black people. If they’re making decisions on a Black person coming to the hospital and spending a dime more for them, I think they would cut all services. I think people triage on the basis of race, class, sex, and injury.” --Black focus group participant (Waters, 2001) 22 31% of cancer patients do not receive adequate pain medication in Feel confident that public hospitals health care professionals will administer adequate 50% of patients with pain medication long-bone fractures received no pain relief in the ED Black White 23 “If there is any chance that life is there, I would suggest to go the extra means. Technology is there to keep people alive and give people longer lives.” - Black focus group participant (Waters, 2001)  “Futility” in treatment is a foreign concept  Only God decides when death comes  Request aggressive medical treatment 24 8

4/29/2019  widespread distrust  perceived to be “death warrants,” signing away a right for care  justification for inferior/inadequate treatment  limit autonomy  hasten death  Strong oral tradition in which final wishes are verbalized and family members are entrusted with carrying out those wishes 25 8.3% of Medicare- eligible hospice patients 10% of total Medicare- eligible population But, in the South, Black Americans are more than 21% of eligible beneficiaries. 26 � Lack of understanding of purpose/outcomes � Poor communication between patient and provider � Incomplete information about terminal illness � Distrust of “comfort care” vs. curative measures � Acceptance means “giving up” � Aggressive treatment often precludes hospice 27 9