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

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Sheri Bartlett Browne, PhD, BCC

Webinar presentation for the National Association of Catholic Chaplains, May 2019

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

• 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

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“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

• I. Contextualizing Oppression
• 3,600 lynchings

1884-1914

• Plessy v. Ferguson

1896-1954

slavery slavery slavery slavery

1640 1640 1640 1640-

• 1865

1865 1865 1865

• Racially restrictive

housing covenants 1926-1968

Jim Crow Jim Crow Jim Crow Jim Crow segregation segregation segregation segregation 1880s 1880s 1880s 1880s-

• 1964

1964 1964 1964

• Poll taxes, grandfather

clauses, literacy tests 1880s-1965

political political political political disfranchisement disfranchisement disfranchisement disfranchisement 1640 1640 1640 1640-

• 1965

1965 1965 1965

white black

Source: Pew Research Center, “Race in America 2019”

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“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

• n racism. That distrust affects our

entire personality in a great many ways.”

• -Black focus group participant (NHPCO, 2008)

U.S. Black U.S. Black U.S. Black U.S. Black population by population by population by population by region, 2016 region, 2016 region, 2016 region, 2016

Northeast Midwest West South

55%

18% 17%

10%

25% 57%

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• 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)

“Just that awareness [about Tuskegee] is enough to stand up generation after generation.”

• - Black focus group participant

(Scharff, 2010)

Tuskegee Tuskegee Tuskegee Tuskegee Study of Untreated Syphilis in the Negro Study of Untreated Syphilis in the Negro Study of Untreated Syphilis in the Negro Study of Untreated Syphilis in the Negro Male Male Male Male (1932 (1932 (1932 (1932-

• 1972)

1972) 1972) 1972)

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 “The “The targets of that targets of that targets of that targets of that [eugenics] board’s [eugenics] board’s [eugenics] board’s [eugenics] board’s 45 45 45 45-

• year reign, from

year reign, from year reign, from year reign, from 1929 1929 1929 1929 to to to to 1974 1974 1974 1974, were disproportionately black and female, , 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).

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“… 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.”

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”

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

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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

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

• f 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).

• 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)

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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

67 34 61 42 32 17 50 27 dialysis Mechanical ventilation Major Surgery CPR

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

No such thing as “unnecessary care.” The perception (and the reality?) is that they will receive no care at all.

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“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)

Black White 31% of cancer patients do not receive adequate pain medication in public hospitals 50% of patients with long-bone fractures received no pain relief in the ED Feel confident that health care professionals will administer adequate pain medication “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

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• 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

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.

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

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Data on the usage of palliative care in this community are scarce as are studies of patient satisfaction with palliative care. Palliative care consults in inpatient settings generally increase the likelihood that a patient will utilize palliative care. Palliative care does not require the suspension of curative treatment

“Troublingly, fifty years after the close of Vatican II, there is still little raprochement between Catholic bioethics and the CST.” Focuses on specific acts undertaken by

individuals and within a specific clinical encounter

Preoccupied with sterilization, abortion,

reproductive technologies

Lacks an intersectional framework Views health care through the lens of what is

licit or illicit in Catholic doctrine

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Human dignity Common good Preferential Option for the Poor/Marginalized Rights and Responsibilities Subsidiarity Solidarity Participation and Association Rights of Labor and Dignity of Work Care for Creation Peacemaking and Nonviolence Gratuitousness

View:

• autonomy
• dignity
• common good
• the preferential option for the poor and

marginalized

through a new lens and a different place at the table

What is emphasized? What is marginalized? Which CST principles are evident?

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Listen, listen, listen Validate the feelings and negative experiences of those

who mistrust the medical system

Develop extensive cultural humility training for

medical team members that includes immersion

Acknowledge and respect patients’ complex family

systems

Provide culturally- and racially-sensitive spiritual care

for patients, especially those in the dying process

Train the trainer  Engage community pastors Collaborate to provide community healthcare events Develop culturally-appropriate educational programs Mentor future physicians in marginalized communities Advocate for the hiring of a more diverse healthcare

workforce

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• Catholic. (April 2019): 18-22.

_____ and Christian Cintron. “Racial Disparities at the End of Life and the Catholic Social Tradition.” In Catholic Bioethics and Social Justice: The Praxis of US Health Care in a Globalized World, edited by Michael McCarthy and M. Therese Lysaught. Collegeville, MN: Liturgical Press, 2018. Carmon, Irin. “For Eugenic Sterilization Victims, Belated Justice.” MSNBC, June 27, 2014. http://www.msnbc.com/all/eugenic- sterilization-victims-belated-justice Copeland, M. Shawn. Enfleshing Freedom: Body, Race, and Being. Minneapolis: Fortress Press, 2010. Crawley, LaVera, et. al. “Palliative and End-of-Life Care in the African American Community.” Journal of the American Medical Association 284, no. 19 (Nov. 2000): 2518-2521. Dula, Annette and September Williams. “When Race Matters.” Clinical Geriatric Medicine 21 (2005): 239-253. Franklin, John Hope. From Slavery to Freedom: A History of African Americans. 8th edition. McGraw Hill Higher Education, 2000. 286-91; 343-345. Grossman, Cathy Lynn. “Americans Divided on Facing Death: Fight It, Choose It or Let It Come.” Religion News Service, November 21, 2013. Jenkins, Carolyn, et. al. “End-of-Life Care and African Americans: Voices from the Community.” Journal of Palliative Medicine 8 (Nov. 2005): 585-592. Johnson, Kimberly S. “Racial and Ethnic Disparities in Palliative Care.” Journal of Palliative Medicine 16, no. 11 (2013): 1329-1334. Kennedy, B.R., Mathis, C.C., and Woods, A.K. “African Americans and Their Distrust of the Health Care System: Healthcare for Diverse Populations.” Journal of Cultural Diversity 14, no. 2 (Summer 2007): 56-60.

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Martin, Nina. “Black Mothers Keep Dying after Giving Birth.” NPR.org December 7, 2017. National Hospice and Palliative Care Organization (NHPCO). “African American Outreach Guide,” 2008. https://www.nhpco.org/sites/default/files/public/Access/African_American_Outreach_GuideFull.pdf _____. “Facts and Figures,” 2016 edition. https://www.nhpco.org/sites/default/files/public/Statistics_Research/2016_Facts_Figures.pdf Rhodes, Ramona L., et. al. “Barriers to End-of-Life Care for African Americans from the Providers’ Perspective: Opportunity for Intervention and Development.” American Journal of Hospice & Palliative Medicine 32, no. 2 (2015): 137- 143. Stanford Center on Poverty and Inequality, ed. 2017. “State of the Union: The Poverty and Inequality Report.” Special issue, Pathways Magazine. http://inequality.stanford.edu/sites/default/files/Pathways_SOTU_2017.pdf Scharff, Darcell P., et. al. “More than Tuskegee: Understanding Mistrust about Research Participation.” Journal of Health Care for the Poor and Underserved 21, no. 3 (Aug. 2010): 879-897. Smith, Alexander K et al. “Differences in the quality of the patient-physician relationship among terminally ill African- American and white patients: impact on advance care planning and treatment preferences.” Journal of general internal medicine vol. 22,11 (2007): 1579-82. doi:10.1007/s11606-007-0370-6 The Henry J. Kaiser Family Foundation. “Profile of Medicare Beneficiaries by Race and Ethnicity: A Chartpack,” March 9,

• 2016. https://www.kff.org/report-section/profile-of-medicare-beneficiaries-by-race-and-ethnicity-tables/

Waters, Catherine M. “Understanding and Supporting African Americans’ Perspectives of End-of-Life Care Planning and Decision Making.” Qualitative Health Research 11, no. 3 (May 2001): 385-398.

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