Cultural Relevance in End-of-Life Care

Phyllis R. Coolen, DNP, RNPLFSOM 2nd Annual Cultural Competence SeminarTexas Tech University, El Paso, TexasApril 12, 2013

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Presentation Overview

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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The Relevance of Cultural Competency

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.

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Relevance of Cultural Competency in End-of-Life Care

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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Communication = Greatest Barrier

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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Cultural Factors to Consider in End-of Life Care 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.

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Cultural Assessment

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.

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Cultural AssessmentKleinman’s Explanatory ModelKleinman’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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Geiger’s Model:

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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Kagawa-Singer & Blackhall Nemonic Approach ABCDE:

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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Advance Directive

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.

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Other Health Care Decision Documents

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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Cultural Issues Around Advance Directives

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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Approaches to Discussions About Advance Directives

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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Pain Management

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.

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Case Study 1

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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Case Study 2

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

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References

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.

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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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References

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.