Phyllis R. Coolen, DNP, RN PLFSOM 2nd Annual Cultural Competence Seminar Texas Tech University, El Paso, Texas April 12, 2013

The Relevance of Cultural Competency in End-of Life Care

Cultural Factors to Consider in End-of Life Care

Cultural Assessment Advance Directives Pain Management Case Studies

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United States moving towards a more ethnically and

culturally diverse country 2040 white are expected to account 50% of

population Continued immigration Latin American and Asia “Minority Majority “in a number states and cities

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Challenge patient’s cultural norms different from

the healthcare provider’s own American norms and culture values American core values emphasize autonomy and individual

rights to make life choices, especially healthcare and end-of-life choices.

The 1990 Federal Patient Self-Determination Act (PSDA) ensures individual rights.

2010 National Healthcare Disparities Report Disparities in palliative and end-of-life care for

ethnically diverse groups ▪ Less likely to receive right amount emotional support ▪ Less likely to receive end-of-life care consistent with their

wishes ▪ More likely to report poorer communication with their

physicians and nurses ▪ Had a greater misunderstanding about care options; less

knowledge about end-of-life care and advance directives ▪ Wenger et. al (2001) found that practitioners discussed

end-of-life care less with Blacks, Latinos, HIV via IV drug users, those less educated, and the poor.

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Nurse: “ I was having a difficult time understanding why this Asian family was making all the decisions and not allow the patient to do anything for himself.”

Nurse: “It is difficult when the family does not want us to talk about dying to the patient and even use the term “cancer “or “dying”.

Social worker: “Often make assumptions about what the person wants or says and we are so off the mark, because we don’t know enough about the culture.”

Chaplain: “We aren’t intentionally giving bad care, we simply lack the knowledge and training.”

Physician: “It is not easy to talk about end-of-life care or advance directives, especially if we use an interpreter - not sure if what I am telling the patient is actually being translated correctly”.

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Death as a Taboo Subject Not acceptable to discuss Considered disrespectful, bad luck, cause a loss of hope, despair Protecting the dying family member

Collective Decision-making Norm in many cultures Family is the decision maker; Filial Piety Power of collectivism more important than individual

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Perception of the Physician’s Status Physician only one with authority ▪ Discussion is a sign of disrespect ▪ Asking questions means challenging authority

Cultural influences on preference of where to die Home = Samoans, Vietnamese, Asian Indians, Koreans Hospital = Chinese

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Role of Religion and Faith Many ethnically diverse cultures, approach to

health and illness is through interconnection of mind, body, spirit with nature or the environment. Faith and spirituality can play a significant role in

the perception and response to the dying process.

Kleinman and Campbell’s Patient Explanatory Assessment Model

Giger-Davidhizar/Huff

Kagawa-Singer & Blackhall’s ABCD Assessment

Model Coolen: http://ethnomed,org/clinical/end-of-

life/cultural-relevance-in-end-of-life-care. 10

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Kleinman’s explanatory model uses 8 simple questions that clarify cultural generalization and provide insight into the patient’s personal meaning of illness. (Campbell added 4 other questions to Kleinman’s relating to family’s viewpoint.)

• What do you think has caused your illness?

• Why do you think your illness started when it did?

• What do you think your illness does to you? How does it work?

• How severe is your illness/ • What kind of treatment do you think

you should receive? • What are the most important results

you hope to receive from this treatment?

• What is the main/biggest problem your illness has caused you?

• What do you fear most about your illness?

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Communication

What’s the usual pattern of communication? Who’s the spokesperson/decision maker? Terms used?

Space

Family closeness valued? Family defined

Time

Present, Past, Future Oriented?

Environmental Control

Locus of control?

Social Organization

Spiritual beliefs? Use of traditional medicine

Biological Variation

Usual responses to medication

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Attitude – About truth telling, positive or negative attitudes about health care

Do you use any traditional healing practices?

Beliefs – Religious/ Spiritual beliefs

How can we support your needs and practices? Where do you find your strength to make sense of what is happening to you?

Context –Historical, political, immigrant, refugee, acculturation

• Where were you born and raised? • How long have you been in the US? What

language are you most comfortable using?

Decision-making style – who is major decision maker, collectivism, filial piety

• How are decision about health care made in your family?

• Is there anyone else I should talk to in your family about your condition?

Environment – Available resources

• Identify community resources

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Document expressing person’s wishes concerning certain life sustaining medical treatment when a person is seriously ill or at the end of life, should the person not be able to communicate his or her wishes.

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Differences in each state WA used only when life-sustaining treatment would

artificially prolong life in a terminal condition or when individual is in an irreversible coma. Signed by two witness, not be notarized. Texas – signed two witness/notarized.

Five Wishes – legal advance document in 42 states. Translated in 26 languages . Not legal form in Texas https://fivewishesonling.agingwithdignnity.org.

Durable Power of Attorney for Healthcare Legal document designating person to make medical

decisions when individual is incapacitated. WA -Not need to notarized or witnessed, advisable to

have lawyer prepare Texas – signed and notarized

WA POLST – Physician’s Order for Life Sustaining

Treatment Not the same as an advance directive Specific Orders by the physician or ARNP indicates what

type of life sustaining treatment individual wants.

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Ethnic minorities have lower rates of a completed advance directive Lack of knowledge Lack of understanding Distrust in the health care system and concern wishes won’t be carried out Acculturation Collectivism decision-making Preference Physician to make decisions Fear of death, death is a taboo subject Influence of religion or spirituality

Key is in the planning process and developing a trusting relationship with patient and family

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Private Sufficient time Who needs to be involved in the discussion Interpreter – Understand the purpose of “Aggressive treatment” - education “Nothing can be done” Use of community support – leaders, religious

or spiritual leaders

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Health disparities among ethnically diverse groups and the poor receive worse care Disparities in Pain Management Less likely to receive pain medication or receive

lower doses even if patient has advanced cancer

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Miscommunication and perception of pain needs ▪ Common theme across all ethnic groups (Im,

et.al) Chung et.al – Chinese and Japanese Americans’

cancer pain significantly under estimated by nurses and physicians.

Anderson et. al – African American and Hispanic patients’ pain severity significantly under estimated by physicians despite having recurring or advanced cancer.

Coolen et.al – many healthcare providers associated minorities and low income patients with drug seeking behavior/addiction = result is under treatment of legitimate pain.

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Disparities in Pain Management Lack of access to care Lack of appropriate access to analgesics and opioids Lack of access to pain specialist Language barriers

Patient’s pain must be considered within the context of the individual’s beliefs and values – culture influences person’s perception and response to pain

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Perception of pain and request for pain Culture affect person’s response to pain both in

meaning and expression of pain Create barriers

Use of traditional practices

Coin Rubbing Cupping Herbal Remedies

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Assessment – Explanatory Model (Kleinman) What do you call your pain? Why do you think

you have this pain? What cultural remedies have you tired to help

you with your pain? Have you seen a traditional healer for your

pain?

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http://www.wongbakerfaces.org/resouces. ©1983, Wong-Baker FACES ™.org. Used with permission.

McCaffery, M., & Beebe, A. (1993). Pain: Clinical Manual for Nursing Practice. Baltimore: V.V. Mosby Company.

Mr. S is a 53 year old Cambodian immigrant with incurable metastatic colon cancer diagnosed 3 months ago. He has limited English proficiency. He is admitted to impatient care for placement of a peritoneal drainage for malignant ascites. The only pain medication ordered is Vicodan, 1-2 tablets every 6 hours as needed. His wife speaks English well. Night shift notes that patient did not ask for any pain medication. Early am visit by the hospice nurse notes that patient is in severe pain – moaning and groans with slight movement. Wife states he has had a bad night and can anything be done to make him more comfortable. Sampeah Greeting Cultural Assessment Performed Pain Assessment Performed

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Mrs.V. is a 68 year old Filipino Hawaiian with end-stage chronic obstructive pulmonary disease. She is also an insulin dependent diabetic. She lives with her son, daughter-in-law and four grandchildren. She has gotten weaker and has fallen several times, tripping over rugs and stuff. She also only likes to eat peanut butter and jelly sandwiches for breakfast and lunch, despite nutritional counseling. She has been on hospice for a month and staff are frustrated with her continued high risk of falling and “noncompliance” with her diet. Every questions asked of client – client needed to “talk story” Take time to listen to her stories to separate out her issues and concerns

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Thank You

“Their surrounding should be as beautiful as possible; a calm peaceful, serene, holy environment is so

important. There should be beautiful views, beautiful art, flowers, images of deities and holy beings. The point is to make a positive imprint on the person’s

mind. The person’s mind is elevated and they are not afraid to die. “

Lama Zopa Rinpoche

Agency for Healthcare Research and Quality. (2011). 2010 National Healthcare Disparities Report. (11-0005). Rockville, MD: AHRQ

Anderson, K., Mendoza, T., Valero, V., Richman, S., Russell, C., Hurley, J., . . . Cleeland, C. (2000). Minority cancer patients and their providers pain management attitudes and practice. Cancer, 88(8), 1929-1938.

Coolen, P. Cultural Relevance in End-of-Life Care. Harborview Medical Center/University of Washington Medicine EthnoMed Website: http://ethnomedorg. July 16, 2012.

Chung, S., Masaki, K., Somogyi-Zalud, E., Sumida, K., Wen, A., & Blanchette, P. (2009). Assessment of pain in older Asian Americans with cancer. Hawaii Medical Journal, 68(9), 62-65.

Coolen P., Best, S., Lima, A., Sabel, J., Paulozzi, L. Overdose deaths involving prescription opioids among Medicaid enrollees - Washington 2004-2007. Journal of the American Medical Association 303 (1). January 6, 2010.

Doorenbos, A., Lindhorst, T., Schim, S., Van Schaik, E., Demiris, G., Wechkin, H., & Curtis, J. (2010). Development of a web-based educational intervention to improve cross-cultural communication among hospice providers. J Soc Work End Life Palliat Care, 6(3-4), 236-255

Ekblad, S., Marttila, A., & Emilsson, M. (1999). Cultural challenges in end-of-life care: reflections from focus groups' interviews with hospice staff in Stockholm. Journal of Advanced Nursing, 31(3), 623-630.

Electronic Code of Federal Regulations. (2011). Title 42: Public Health. Part 489 - Provider Agreements and Supplier Approval Subpart 1 Advanced Directives Retrieved November 3, 2011, from http://thomas.loc.gov/cgi-bin/query/z?c101:H.R.4449.IH:

Frey, W. (2012). The State of Metropolitan America, http://www.brookings.edu/opinions/2011/1220_census_demographics.aspx

http://www.wongbakerfaces.org/resouces Im, E., Lee, S., Liu, Y., Lim, H., Guevara, E., & Chee, W. (2010). A national outline forum on ethnic differences in

cancer pain experience. Nursing Research, 58(2), 86-94.

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Jovanovic, M. (2011). Cultural competency and diversity among hospice palliative care volunteers. American Journal of Hospice and Palliative Medicine.

Kagawa-Singer, M., & Backhall, L. (2001). Negotiating cross-cultural issues at end of life. Journal of American Medical Association, 286(3001), 2993-.

Kamaka, M. (2010). Designing a cultural competency curriculum: asking the stakeholders. Hawai'i Medical Journal, 69(6), 31-34.

Klessig, J. (1992). Cross-cultural medicine a decade later: the effect of values and culture on life-support decisions. The Western Journal of Medicine, 157(3), 316-322.

Kwak, J., & Haley, W. (2005). Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist, 45(5), 634-641.

Kwak, J., & Salmon, J. (2007). Attitudes and preferences of Korean-American older adults and caregivers on end-of-life care. Journal of Geriatrics Society, 55(11), 1867-1872.

Maly, R., Umezawa, Y., Raliff, C., & Leake, B. (2006). Racial/ethnic group differences in treatment decision-making and treatment received among older breast carcinoma patients. Cancer 106(4), 957-965.

Matsumura, S., Bito, S., Lihu, H., Kahn, K., Fukuhara, S., Kagawa-Singer, M., & Wenger, N. (2002). Acculturation of attitudes toward end-of-life care: a cross-cultural survey of Japanese Americans and Japanese. Journal of General Internal Medicine, 17(7), 531-539.

McCaffery, M., & Beebe, A. (1993). Pain: Clinical Manual for Nursing Practice. Baltimore: V.V.Mosby Company

Washington State Medical Association. https://www.wsma.org/advance-directives. Wenger, N., Kanouse, D., Collins, R., Liu, H., Schuster, M., Gifford, A., . . . Shapiro, M. (2001). End-of-life

discussions and preferences among persons with HIV. Journal of American Medical Association, 285(22), 2880-2887.

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