powerpoint presentation · distress at the end of life,” (j. of pain and symptom management...

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MNHPC 29th Annual Conference | April 14–16, 2019 www.mnhpcconference.org

Cultural Competency and Humility:A Prep Course for Hospice and Palliative

Professionals

(Rev.) Shuji Moriichi, M.A., M.Div., BCC, Chaplain

Park Nicollet Methodist Hospice


DISCLAIMER #1

• This hour is not designed to create a culturally competent and

humble human being in all aspects of life in our society. Our

goal is much more reasonable and modest, and our focus is

more particularly placed on our day-to-day work in

hospice/palliative care.


DISCLAIMER #2

• This hour is not to give you bullet-points of information of a

single racial/ethnic and religious group’ beliefs and practices.

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“(Cultural humility is) a lifelong process of self-reflection and self-

critique…the most serious barrier to culturally appropriate care is not a

lack of knowledge of the details of any given cultural orientation, but the

providers’ failure to develop self-awareness and a respectful attitude

toward diverse points of view.” - Hutt, L., “Beyond Cultural Competence (underline the presenter’s); also for definitions of “cultural

competence” and training, cf. Padela, A. et al., “Religious Values and Healthcare Accommodations:

Voices from the American Muslim Community,” JGIM (2012)


Culture: The learned, shared, and transmitted values, beliefs, norms,

ad life practices of a particular group that guides thinking, decisions,

and actions in patterned ways.Cf. Leininger, M. A., “Leininger’s Theory of Nursing: Cultural Care Diversity and Universality,” Nursing

Science Quarterly (1988)


Why are we talking about cultural competency and humility

today?

Why are they important in healthcare/palliative and hospice

care?

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Shifting Perspective – Culture Matters (in Health Care)

Culture provides context in which the patient experiences diseases.“…disease in the Western medical paradigm is malfunctioning or maladaptation of biologic and psychophysiologic processes in the individual; whereas illness represents personal, interpersonal, cultural reactions to disease or discomfort. Illness is shaped by cultural factors governing perceptions, labeling, explanation, valuation of the discomforting experience, process embedded in a complex family, social, cultural nexus. Because illness experience is an intimate part of social systems of meaning and rules for behaviors, it is strongly influenced by culture; it is as we shall see, culturally constructed.” - Kleinman, A. et al., on the social construction of clinical reality, “Culture, Illness, and Care: Clinical Lessons from Anthropological and Cross-Cultural Research,” Annals of Internal Medicine (1978). Also cf. Kagawa-Singer, M. et al., “A Paradigm for Culturally Based Care in Ethnic Minority Population,” J. of Community Psychology (1994)


DISCLAIMER #3

• Yes, we are going to talk about race/ethnicity and diversity today. (But, the presenter does not come from the Human Resources department.)

• This is not annually mandated education (i.e., your participation is voluntary).

• There will be no “forced” small group sharing of thoughts and feelings.


WARNING

Handle any portion of your learning experience today with care;

use it as a tool in your mental toolbox that helps you to

understand your patient better, not a “colored lens” though which

you see him/her (this could lead to STEROTYPING).

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STEREOTYPING ALERT:

1. Unity vs. Diversity – Any cultural group is not homogeneous (though a cultural unity may be detected).

2. Subcultures within each racial/ethnic group (intracultural differences) exist.

3. Culture is fluid and dynamic.Cf. Koenig, B. A. et al., “Understanding Cultural Difference in Caring for Dying Patients,” Western J. of Medicine (1995)


“Is it because he is black (Hmong, Latino, etc.)?”

“Efforts to use racial or ethnic background as simplistic, straightforward

predictors of beliefs or behaviors will lead to harmful stereotyping of

patients and culturally insensitive care of the dying….Culture is only

meaningful when interpreted in the context of a patient’s unique history,

family constellation, and socioeconomic status.”- Koenig, B. A., “Understanding cultural differences in caring for dying patients,” Western Journal of Medicine

(1995). Also cf. Crawley L., “Racial. Cultural, and Ethnic Factors Influencing End-of-Life Care,” Journal of

Palliative Medicine (2005), etc.


The intersectionality of our differences

(from a relational perspective)“We, as humans, are a complex intersection of the many dimensions of diversity

that make us unique and yet like other people. Such thinking supports an

understanding of the complex interactions of social relations and fosters the skills

necessary to navigate our increasingly multicultural world. I cannot separate my

gender from my race or my ethnicity, or my mental from my physical abilities, or

my age from my sexual orientation. I am a wonderfully made complex set of

variables that makes me uniquely me.” – Plummer, D. Some of My Friends are…: The Daunting

Challenges and Untapped Benefits of Cross-Racial Friendships (2019)

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Race and Ethnicity – Why They Matter (in Health Care)

Race/ethnicity is a greater personal attribute than other socioeconomic factors (e.g., gender, income, educational achievement, etc.) relevant to a predisposition to use hospice care and other health-care decision-making.

Cf. Caralis, P. V. et al., “The influence of ethnicity and race on attitudes toward advance Directives, Life-Prolonging Treatments, and Euthanasia,” The J. of Clinical Ethics (1993); Neubauer, B. J. et al., “Racial Differences in Attitudes toward Hospice Care,” The Hospice Journal (1990); Payne, R., “Racially Associated Disparities in Hospice and Palliative Care Access: Acknowledging the Facts While Addressing the Opportunities to Improve,” J. of Palliative Medicine (2016), etc.


Race and Ethnicity – Why They Matter (in Health Care)

“Even patients who generally display low adherence to ethnic culture

may report to ethnically-derived, nonmainstream modes of health

behavior in certain situations, especially those involving great

emotional stress, such as terminal illness.”- Harwood, A. (ed.). Ethnicity and Medical Care (1981); also cf. Krakauer, E. et al., “Barriers to Optimum End-

of-Life Care for Minority Patients,” JAGS (2002)


Different Attitudes among Racial/Ethnic Minorities in Health

Care Decision-Making

More racial/ethnic minorities prefer the use of life support and other

aggressive life-sustaining measures at the end of life than whites and

want to live as long as possible under any circumstances.Cf. Hallenbeck, J. et al. “Cultural Considerations of Death and Dying in The United States,” Clinics in Geriatric

Medicine (1996), Caralis, P.V. et al. “The influence of ethnicity and race on attitudes toward advance

directives,” J. of Clinical Ethics (1993), Garrett, J. M. et al., “Life-sustaining treatments during terminal illness:

Who wants what?” J. of General Internal Medicine (1993), etc.

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Different Attitudes among Racial and Ethnic Minorities in Health Care Decision-Making

Racial and ethnic minorities patients hold less knowledge of advanced care directive and more resistant to it than whites.*

Cf. Blackhall, et al. “Ethnicity and attitudes towards life sustaining technology,” Social Science and Medicine (1999); Caralis, et al. “The influence of ethnicity and race on attitudes toward advance directives, life-prolonging treatments, and euthanasia,” J. of Clinical Ethics (1993); Kwak, J., Haley, W., “Current Research Findings on End-of-Life Decision Making Among Racially or Ethnically Diverse Groups,” The Gerontologist (2005); Phipps, E. et al., “Approaching the End of Life: Attitudes, Preferences, and Behaviors of African-American and White Patients and Their Family Caregivers,” J. of Clinical Oncology (2003), Luth, E. et al., “Unintended Harm? Race Differences in the Relationship Between Advance Care Planning and Psychological Distress at the End of Life,” (J. of pain and Symptom Management (2018), etc.



African Americans are the most religious group as a whole in

the United States (and more likely to identity religion as having

had more influence upon their attitudes toward death).Cf. Neubauer, et al., “Racial Differences in Attitudes Toward Hospice Care,” The Hospice Journal (1990);

Reese, D. J. et al., “Hospice Access and Use by African Americans: Addressing Cultural and Institutional

Barriers through Participatory Action Research,” Social Work (1999). According to the 1997 Gallup Pall, 71%

of African Americans attended mostly or all African American congregations; 73% of African Americans were

Protestants (48 % Baptist), 9% Catholic; only 8% had no religious affiliation.



Different care-giving patterns*:

African American patients are more likely to have a caregiver outside the immediate family (while European American patients cared by a spouse);

Substantial intergenerational support between elders and their children exist;

Hispanic elderly tend to live in the community and are less likely to utilize long-term care institutions;

Hispanic elderly are almost twice as likely as the general elder population to have more than one limitation in activities of daily living. Cf. Colon, M. et al., “Comparison of hospice use and demographics among European Americans, African Americans, and Latinos,” American Journal of Hospice and Palliative Care (2003); Talamantes, M. A. et al., “Hispanic American elders: caregiving norms surrounding dying and the use of hospice services,” The Hospice Journal (1995); Tatum, B. D., Assimilation Blues (1987), etc.

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Changing Demographics (Race and Ethnicity – Why They Matter)

• By 2042, minorities are expected to become the majority in the United States. In 2050, the United States is projected to be 54% minority.

• According to the U.S. Census Bureau estimate, in 2015 Minnesota is 19% “people of color” and 81% Whites. (In 1980, “people of color” were 3.8%, in 1990 6.3%, and in 2000 11.8%. From 2000 to 2015 Minnesota added 4 times as many “people of color” as Whites.)


Racial/Ethnic Disparities in Hospice Care – Snap Shots

• Between 2000 and 2011, the proportion of Medicare beneficiaries who enrolled in hospice nearly doubled from 23% to 45%. However, despite its growth, African Americas continue to use hospice at lower rates (35%) than whites (47%) – Johnson, Payne, Kuchinbhatla, Tulsky, “Are Hospice

Admission Practices Associated with Hospice Enrollment for Older African Americans and Whites?” J. of Pain and Symptom Management (2016)

• 83% of hospice patients nation-wide are whites – National Hospice and Palliative

Care Organization (2000).


“Access to hospice services, i.e., admission to hospice care,

among minority groups has been consistently low.”*

– O’Mara, A. M. & Arenella, C., “Minority Representation, Prevalence of Symptoms, and Utilization of Services

in a Large Metropolitan Hospice,” J. of Pain and Symptom Management (2001); also cf. Colon, M. & Lyke, J.,

“Comparison of hospice and demographics among European Americans, African Americans, and Latinos,”

American J. of Hospice & Palliative Care (2003), etc.

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Persistent health care disparities through the course of life (shown in, e.g., higher infant and maternal mortality rate, shorter life expectancy, inadequate poor pain relief, greater instability at hospital discharge, fewer mammograms, etc.)

“Large disparities exists between use of the most varied medical services by minorities and use of the same services by European Americans…Evidence of disparities is most plentiful for African Americans.” - Krakauer, E. L., Crenner, C., Fox, K., “Barriers to Optimum End-of-Life Care for Minority Patients,” JAGS (2002)



Lack of racial/ethnic diversity among hospice workers (including hospice volunteers) and lack of primary physicians of color as referral sources for hospice (and lower rate of African Americans access to primary physicians and lower rate of African American with health insurance than whites)

Cf. Colon, M. et al., “Comparison of hospice use and demographics among European Americans, African Americans, and Latinos,” American J. of Hospice & Palliative Care (2003); Gordon, A. K., “Hospice and minorities.” Hospice Journal (1996); Noggle, B., “Identifying and Meeting Needs of Ethnic Minority Patients,” The Hospice Journal (1995), etc.


Race and Ethnicity – Why They Matter

“Same treatment does not mean equal treatment.”

“Whites tend to take an assimilation approach and ignore power and privilege by downplaying differences. This approach results in people of color feeling disrespected. ‘We are all alike… We all bleed the same way…. I don’t see race. You are just like me!’ This kind of thinking makes people of color smile politely and then run to the nearest exist.” – Plummer, D., Some of My Friends Are…: The Daunting Challenges and Untapped Benefits of Cross-Racial Friendships (2019).

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REMINDER: Lack of sensitivity to, and respect for, cultural

differences may compromise end-of-life care for minority

patients.


“Every person is like all others,

like some others,

and like no others.”

(Quoted in Payne, R., “Culturally relevant palliative care,” Clinics in Geriatric Medicine [2015)])

- INTERMISSION & SHORT Q&As -


Brief Case Study

A chaplain speaks at an Advance Care Directive training session –

“The patient filled out the form and looked

at her daughter at bedside and said,

‘This is also what you want, right?’

When I noticed that, a red flag went up in my head!”

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Questions:

What do you think raised a “red flag” in this chaplain’s mind?

What was his main concern?

What bioethical principle is at stake in this case?


Four Bioethics Principles

Autonomy (reflected in the general ideas of informed consent, truth-telling, and

fiull-disclosure for medical care)

Beneficence

Non-Malfeasance

Justice(These four principles appeared in the class text The Principles of Biomedical Ethics [Beauchamp and

Childress] published in 1979, the first American textbook on bioethics.)


Autonomy: The concept that characterizes the person (patient) as a solitary

competent individual who possesses a sphere of protected activity or privacy free

from unwanted interference. Cf. Kuczewski, M., ”Recovering the family: the process of consent in

medical decision-making,” The Hastings Center Report (1996)

Q. Is the principle of autonomy

universally accepted?

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Western Civilization “at a Glance”

Phase 1: “…how to order society…how to balance the needs of individuals and

groups…Most societies have chosen the sociocentric answer…;”

Phase 2: “The sociocentric answer dominated the most of the ancient world, but

the individualistic answer became a powerful rival during the Enlightenment;”

Phase 3: “The individualistic answer largely vanquished the sociocentric

approaches in the twentieth century (in the Western world).”

- Excerpted from Haidt, J., The Righteous Mind (2012), reorganized by the presenter.


“I think; therefore I am.” – Rene Descartes (1596-1650)

(“I am because we are.” - A Ubuntu [South African] proverb)


Biomedical Ethical Principles

of, by, and for

the “Weird” People?

“It is a truly unusual group: people from Western, Educated, Industrialized, Rich, and Democratic (WEIRD) society.”

- Henrich, J., Heine, S., Norenzayne, A., “The weirdest people in the world?” Behavioral and Brain Sciences (2010).

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A distinctive trait of the WEIRD people –

“…Westerners tend to have more independent, and less

interdependent, self-concepts than those of other populations.”

- Henrich, J. et al., “The weirdest people in the world?”


“Much research has underscored how Westerners have more independent views

of self than non-Westerners…people from Western populations are far more likely

to understand their selves in terms of internal psychological characteristics, such

as personality traits and attitudes, and less likely to understand them in terms of

roles and relationships, than are people from non-Western populations…”

Q. So, westerners, in general, are equally individualistic

(in healthcare decision-making)…?


“American medical ethics places a premium on patients serving

as their own decision makers.”- Phipps, E. et al., “Approaching the End of Life: Attitudes, Preferences, and Behaviors of African-American

and White Patients and Their Family Caregivers,” J. of Clinical Oncology (2003)

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The Weirdest People in the World…?

“Americans stand out relative to other Westerners on phenomena that are associated with independent self-concepts and individualism…Americans are, on average, the most individualistic people in the world.”

“The unusually individualistic nature of Americans may be caused by, or reflect, an ideology that particularly stresses the importance of freedom and self-sufficiency, as well as various practices in education and childbearing that may help to inculcate this sense of autonomy.” - Henrich, J., et al., “The weirdest people in the world?”


Autonomy - Italian Examples

Autonomy is often synonymous for isolation.

The possibility of truth-telling (to the patient) withholding still exists (but not to the family).

The general public holds the attitudes that the patients will never acquire enough knowledge to enable them to fully and appropriately participate in their care.

The patients typically know or at least strongly suspect the truth, but they are part of a generally accepted farce of deception that prevents open discussion about the truth and how to act on it.

Cf. Surbone, A., “Letter from Italy: Truth Telling to the Patient,” JAMA (1992)


Autonomy - Greek Examples

“Doctors should not lie, but should disclose to their patients the part of the truth they are ready to accept.”

Diverse opinions exist regarding the Greeks’ wish to be informed of the nature of their illnesses (per age, marital status, occupation, education, etc.) but the words “rights to know” are rarely invoked.

The extent of medical litigation is still limited and Greek doctors do not feel obligated to disclose the truth in the same way American or British doctors would.

Cf. Dalla-Vorgia, P. et al., “Attitudes of a Mediterranean population to the truth-telling issue,” J. of Medical Ethics (1992).

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Autonomy - Russian Examples

The doctor, not the nurse, is expected to transmit the medical news to the

family or to the patient.

Patient problems are family problems and are discussed by the entire family;

the entire family makes decisions.

It is important to include family members in the decision about the time and the

way that “telling of the truth” about the illness will take place.

Cf. “End of Life Care: The Russian Culture,” Culture Clues: Patient and Family Education Services (2002)


Truth-Telling (Cancer Diagnosis)

A low percentage (< 40%) of oncologists revealed the word cancer (and substituted with a “swelling” “tumor” “lump”) in Africa, France, Hungary, Italy, Japan, Panama, Portugal, and Spain; a high percentage (> 80%) revealed it in Austria, Denmark, Finland, The Netherlands, New Zealand, Norway, Sweden, and Switzerland;

The majority of the physicians tell the family diagnosis;

The languages between doctor and patient is constrained by cultural norms.

Cf. Holland, J. C. et al., “An international Survey of Physician Attitudes and Practice in Regard to Revealing the Diagnosis of Cancer,” Cancer Investigation (1987)


“While in North America, the move from paternalism to autonomy has

been substantial, in Europe and other parts of the world, these ideas

coexist.” - Oppenheim, A. et al., “Cross-cultural ethical decision-making in critical care,” Critical Care

Medicine (1998)

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“…autonomy remains a vital moral bulwark against oppression, but [that] it is not an all-encompassing guide to living good lives or

building good communities.”- Murray, T. H., “Individualism & Community: The Contested Terrain of Autonomy,” Hastings Center Report

(1994)

“Any conception of autonomy that fails to incorporate socially situated interpersonal relations rests on illusion.”

- Donchin, A., “Autonomy, Interdependence, and Assisted Suicide: Respecting Boundaries/Cross Lines,” Bioethics (2000)


Question: In increasingly multi-racial/multi-ethnic, diverse America…

Are ALL Americans equally individualistic

or are some groups more collectivistic?

Do some racial/ethnic minorities possess

different social values and attitudes toward

healthcare decision-making from whites?


Answer: (Your Answer Here)

“…the individualism associated with American culture is a minority paradigm in relation to the world’s population and cultural frameworks. The impact of the cultural imposition of Western principles is evident not only in global relationships but also within the common diverse cultural context of American society.”

- Elliott, A. C., “Health Care Ethics: Cultural Relativity of Autonomy,” J. of Transcultural Nursing (2001); also cf. Crawley, L. et al., “Strategies for Culturally Effective End-of-Life Care,” Annals of Internal Medicine (2002)

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Multi-Racial/Multi-Ethnic America – Snap Shots

“In the ethnic groups (e.g., East Asian, Bosnian Americans, Japanese, Korean Americans, Middle Eastern Lebanese, etc.), group consensus and decision making by family are more valued than individual decision making.”- Johnstone, M. et al., “Ethics and Advance Care Planning in a Culturally Diverse Society,” J. of Transcultural Nursing (2009); also cf. Bito, S. et al., “Acculturation and end-of-life decision making: Comparison of Japanese and Japanese American focus groups,” Bioethics (2007); Blackhall, L. J. et al., “Ethnicity and attitudes toward patient autonomy,” JAMA (1995); Candib, L., “Truth telling and advance planning at the end of life” Problems with autonomy in a multicultural world,” Family Systems & Health (2002);



Hispanic older adults are less likely than Whites to believe that a formally designated health care proxy was needed when the family was involved in the medical setting, because of the risk that family members other than the designated surrogate could be removed from the decision-making.

Cf. Morrison, R. S. et al., “Barriers to completion of health care proxies: An examination of racial/ethnic differences,” Archives of Internal Medicine (1998); Perkins, H. S. et al., “Cross-cultural Similarities and Differences in Attitudes About Advance Care Planning,” JGIM (2002), etc.



Among Korean, Japanese and Chinese Americans are found to believe that end-of-life decision making is the family’s responsibility and that filial piety* and family-centered decision making patterns are commonly observed.

- Cf. Blackhall, L. J. et al., ‘Ethnicity and attitudes toward patient autonomy,” JAMA (1995); Bowman, K. W. et al., “Chinese seniors perspectives on end-of-life decisions,” Social Science and Medicine (2001); Matsumura, S. et al., “Acculturation of attitudes toward end-of-life are: A cross-cultural survey of Japanese Americans and Japanese. J. of General Internal Medicine (2002), etc. ; Elderly Mexican Americans are also likely to hold the same view that the family should be the primary decision maker (cf. Kagawa-Singer, M. et al., “Negotiating Cross-Cultural Issues at the End of Life,” JAMA [2001]).

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Filial piety: One of the key Confucius moral values; the concept widely accepted and culturally rooted in East Asia that a family member, particularly in a child-parent relationship, has a particular obligation that he/she must undertake, and to do other than what is culturally expected would be a failure or disgrace (or “to lose face”).

Cf. Blackhall, L. J. et al, “ Ethnicity and attitudes toward patient autonomy,” JAMA (1995); Hallenbeck, J. et al., “Cultural considerations of death and dying in the Untied States,” Clinics in Geriatric Medicine (1996), Kagawa-Singer, M. et al., “Negotiating cross-cultural issues at the end of life: You go to go where he lives,” JAMA (2001). “It is a Confucian moral requirement that one should take one’s family as an autonomous unit from the rest of society.” Cf. Fan, R., “Self-Determination vs. Family-Determination: Two Incommensurable Principles of Autonomy,” Bioethics (1997)



An intracultural conflict - Frequent conflict between the dominant (White) culture and the subgroup culture, between the group and the individual in American

“’This idea that the younger generation is culturally mandated to take care of their parents is deeply ingrained in the Chinese culture,’ Mr. Feng said. “Children are supposed to take care of older parents in need.’ But that tradition is being eroded, he said, by the increasing number of families that are geographically dispersed or in which both spouses have to work.” – Vega, T., “As Parents Age, Asian-Americans Struggle to Obey a Cultural Code,” New York Times (2014)


Multi-Racial/Multi-Ethnic America - Snap Shots

Informed Consent/Truth-telling

“In the case of “bad news” being given in a mainstream health care context, there are

high expectations among some cultural groups (e.g., Greek, Italian, Chinese, Indian

Hindus, Middle Eastern Lebanese, Bosnian migrants/refugees, Indigenous peoples) that

the family will assume a protector-advocate and gatekeeping role to ensure that if and

when disclosures are made they are made in a manner that does not deny hope and/or

plunge their ill loved one into a state of soul destroying and hopeless despair.” - Johnstone,

M. et al., “Ethics and Advance Care Planning in a Culturally Diverse Society,” JTN (2002); also cf. Blackhall et al.,

Carrese, J. A. et al., “Bridging cultural differences in medical practice,” J. of General Internal Medicine (2000); Koenig, B.

A. et al., “Understanding Cultural Difference in Caring for Dying Patients,” WJM (1995)

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“For Asian and Hispanic Americans, the family’s role is mean to remove

the burden of making treatment decisions from the patient.”

– Kwak, J. et al., Current Research Findings on End-of-Life Decision Making Among Racially or Ethnically

Diverse Groups,” The Gerontologist (2005).




“For the Chinese and other communities, it is considered callous and

inconsiderate to give all the information regarding grave decisions directly

and openly to the patient. Usually, the situation is discussed with the

family, and only the information the family deems necessary is disclosed

to the patient.” – Oppenheim, A. et al., “Cross-cultural ethical decision-making in critical case.”


Japanese (American) Examples Talking about death and dying is not taboo in their daily conversations but do not

occur with the patients who are close to death.

The family should be informed of the patient information first and then family members would share the appropriate information with the patient.

The preferred decision-making model is by a consensus among the physician and the family, and at times, the patient.

The patients and families see Advance Care Directive to be rather intrusive; they use it in order to reduce burden on the family, not to expressive individual wishes.

Cf. Bito, S. et al., “Acculturation and End of Life Decision Making: Comparison of Japanese and Japanese-American Focus Groups,” Bioethics (2007)

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Ethiopian (American) Communities The extended family is the most important institution.

Families are responsible for managing the information, including diagnostic facts, and the illness experience of a family member during a period of illness. (A family will judge how and when they want to let a patient know and the disclosure of bad news is “staged.”)

Deception has its more subtle passive forms – deceiving by omitting the truth rather than committing a falsehood.

Denying the knowledge of an imminent death is mutually understood by the patient and the family.

Cf. Beyene, Y., “Cross-cultural Medicine: A Decade Later,” WJM (1992)


“…the high value placed on open expression of emotion and on

the rights of individuals to control their destiny are not necessarily

shared by all segments of American society.”

- Blackhall, L. J. et al., “Ethnicity and Attitudes Toward Patient Autonomy,” JAMA (1995)


Cultural Competency and Humility – Review

“…the basic values, principles, and assumptions of western medicine

and bioethics are themselves historically situated and culturally

determined. They are the values and assumptions of a dominant, but

no less particular, culture; the culture constituted by European and

American philosophical and legal traditions.” – Krakauer, E. et al., “Barriers to

Optimum End-of-Life Care for Minority Patients,” JAGS (2002); also cf. Koenig, B. A. et al.,

”Understanding Cultural Difference in Caring for Dying Patients,” WJM (1995).

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“The use of autonomy as a panacea for ethical problems in medicine is a

very recent, and peculiarly American solution to the problems of modern,

technological biomedicine.”

- Wolpe, P. R., “The Triumph of Autonomy in American Bioethics: A Sociological View,” in Bioethics and Society

(1998)



Shifting Perspectives – Culture Matters (in Health Care)

“…our ethical framework must be recast and refined to remove the

presumption that all health care encounters are unicultural.”

- Gervais, K., “Changing Society, Changing Medicine, Changing Bioethics,” in Bioethics and Society (1998)


A Scene at One Interdisciplinary Group Meeting…

A hospice nursing supervisor points out that a patient, Russian-speaking,

has not completed the DNR/DNI portion of his POLST form. A social

worker, looking resigned and sighing…“They are going back and

forth…the patient doesn’t know that he is dying and the family doesn’t

want to tell him…It’s a cultural thing…”

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“It’s a cultural thing…”

Is there anything we can do about it?

OR

There is nothing we can do about it?


CHOICE A:

Paternalism: “Your doctor knows the best; don’t question and do

as he/she says.”

Principalism: The view that ethical decision making and problem solving are

best undertaken by appealing to “universal” moral principles.

Presumption of Assimilation: The attitude that individuals from other

cultures should conform to a single national standard. (Cf. Renteln, A. D., The Cultural Defense [2004]; also cf. Werth, P. R. et al., “The influence of cultural diversity on end-of-life care and decisions,” American Behavioral Scientist (2002)


“This is our way (i.e., American medicine, health system,

organizational policy, etc.)

or

no way

(otherwise there would be anarchy)!”

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CHOICE B

Powerlessness and Frustration: “We cannot do anything about it

(because they are not going to change)”

Moral Relativism and Nihilism: “We cannot even question it or talk

about it and we must give them whatever they want.”


Between the two choices…are there any other?


Changing Models/Expectations

Old Model/Expectation

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Changing Models/Expectations

New Model/Expectation (?)

(Clarification: Ethical principles, organizational

guidelines, philosophical frameworks, etc. are not

bad things; they are useful on many occasions.)


REMINDER #1

“Cultural thing” is integral to the patient’s illness experience and to

our understanding of it;

it is neither “deviation” from the norm

nor “obstacle” placed in our normal care delivery.


REMINDER #2

“Death is inevitably understood and experienced within a complex

web of cultural meaning.” – Koenig, B. A. et al., “Understanding Cultural Difference

in Caring for Dying Patients.”

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Challenges Ahead

Our Segregated Lives 75% of white Americans do not have significant relationships or daily interactions with the

people of color.

The typical social network of a white American is 1% black. (Among whites, 91 % of the people in their social networks are whites; among black Americans, 83% of the people in their social networks were black, and among Hispanic Americans, about 64% were Hispanics, and among Asians, about 54% Asians.) Cf. Dunsmuir, L., “Many Americans Have No Friends of Another Race,” Pew Research Center (2013); Jones, R. et al., “American Values Survey,” Public Religion Research Institute (2013); “Race and Social Connections: Friends, Family, and Neighborhoods,” Pew Research Center (2015), etc.


“A 2015 study of the American Sociological Foundation found that the

highest level of segregation is between blacks and whites, the lowest is

between Asians and whites, and the level between Latinos and whites

occupies an intermediate position. A majority of whites, in both the

expression of their beliefs and the practices of their lives, do not want to

integrate with blacks.”

- DiAngelo, R., White Fragility: Why it’s so hard for white people to talk about racism (2018).


Challenges Ahead – Social Context of Hospice Care

The “Lock-in” Racial Inequality

“A perpetual economic structure in American where, during the Jim Crow era and in its wake, racial discrimination leads to financial profits. This unfair advantage that happened early in America’s history is present in the racial gap of family wealth distribution, homeowners associations, labor unions, political parties, school districts, and other groups that have created monopolies by excluding racial groups.” - Roithmayr, D., Reproducing Racism: How Everyday Choices Lock in White Advantage (2014)

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Challenges Ahead

How can we spread accurate information about hospice and dispel the misperceptions about the motives of providers and medical institutions advocating for advance care planning and greater hospice/palliative care use (through community partnership, through religious institutions and faith leaders, etc.)?

…Hospice and palliative care programs are living up to their goals: There is currently no evidence of racial disparity in the pain treatment of dying patients. Cf. Wilkie, D. et al., “Pain and Symptom Management in Palliative Care and at End of Life,” Nurs Outlook (2012)


Challenges Ahead

Public Health Advocacy

“But what about needs of individuals and communities whose mortality patterns suggest that many deaths are premature and potentially preventable? To serve better a racially and ethnically diverse America, those who are dedicated to improving care for the dying must consider the public health implications of death and dying in the U.S.” – Crawley, L., “Racial, Cultural, and Ethnic Factors Influencing End-of-Life Care,” J. of Palliative Medicine (2005). Also cf. Fiscella, K., et al., “Inequality in quality: Addressing socioeconomic, racial, and ethnic disparities in health care,” J. of the American Medical Association (2000).


Challenges Ahead

How can we help strongly religious patients reframe the meaning of

their spiritual beliefs (“Only God decides when life ends…” “It is in

God’s hands…”) in the context of their particular medical

circumstances in such ways that do not exclude care in hospice and

palliative care settings? (Does God/gods/Devine work through the

hands and minds of hospice and palliative care workers…?)

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Conclusion – Challenges and Hopes Ahead

The next time you encounter a situation where…

…an African American patient declines the Palliative team’s repeated

advice for hospice consult…

…the family of a hospice patient (immigrant from Ukraine) does not want

the hospice team to use the word “hospice” in front of their mother…


…a Hmong patient enrolls in hospice care and the son does not want to discuss funeral arrangements…

…a Latino family wants to continue to care for their dying father despite your professional judgment that they are stretched thin and need a nursing home placement…

…a Somali patient is cared at home and always so many people are coming in and out of her apartment and you don’t know who is a family member, friend, or neighbor…


Can we stop and think…

“Maybe their responses are more normal and common and my reactions and perspectives represent the minority view, an outlier

position, according to the rest of the world…”?

So, instead of asking…

“why can’t they as we do?”

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(Repeat)

How can we skillfully accommodate culturally different views and lead to less aggressive care at the end of life?

How can we help minority patients reframe the meaning of their particular beliefs in the context of their particular medical circumstances in ways that do not exclude care in hospice and palliative care settings?

(Paraphrased from Payne, R., “Racially associated disparities in Hospice and Palliative Care Access,” J. of Palliative Medicine [2016] and changes added by the presenter.)


Steps Forward

Take time to build trust.

Involve local community leaders and agencies for education and

promotion.

Understand historical and social backgrounds and their psychological

impact.

Recognize “social justice” aspect of health care/hospice/palliaive care.


Steps Forward

Build racially/ethnically diverse workforce.“…in organizations, homogeneous groups reach consensus faster, but diverse groups are

more creative and lead to innovation.” – Rock, D., Grant, H., “Why Diverse Teams Are Smarter,” Harvard

Business Review (2016). Also, cf. Rly, R. J., Thomas, D. A., “Cultural Diversity at Work: The Effects of

Diversity Perspectives on Work Group Processes and Outcomes,” Administrative Science Quarterly (2001).

Tailor services to meet unique needs of racial/ethnic minority

communities.

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Hospice workers of the 21st century will need to increase

cultural competency and humility

as a critical edge

to their conventional clinical skills.


So, today, we have just begun

“(Cultural humility is) a lifelong process of self-reflection and self-

critique…the most serious barrier to culturally appropriate care is

not a lack of knowledge of the details of any given cultural

orientation, but the providers’ failure to develop self-awareness

and a respectful attitude toward diverse points of view.”


Any other challenges and signs of hope you see?

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Thank You

and

I hope to see you all again soon!

powerpoint presentation · distress at the end of life,” (j. of pain and symptom management...

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