Minority and Immigrant Populations

INTRODUCTION

The ethnic and cultural makeup of Minnesota is constantly changing. Persons from different backgrounds, cultures, and ethnicities have a variety of health care needs, particularly near the end of life. Health care providers who approach patients in a culturally-sensitive way can help to ease the distress of dying patients and their families (Sheikh, 1998).

Minnesota’s elderly minority and immigrant population is growing. By the year 2025, the number of African Americans over the age of 65 will increase by 478%, Asian Americans by 470%, and Hispanic Americans by 769% (MN DHS, 1998).

The composition of Minnesota has changed over the last ten years. The majority population of non-hispanic whites has decreased from 93.7% in 1990 to 88.2% in 2000. Nearly 200,000 African Americans 140,000 Asian Americans, 130,000 Latino or Hispanic and 55,000 Native Americans persons live in Minnesota. (US Census Bureau, 2001) 1999 death certificate data indicate that 2% of the deaths in the state were African Americans; 1% Asian, and 1% Hispanic.

The staff of the Minnesota Partnership to Improve End of Life Care conducted interviews with fourteen representatives of minority and immigrant communities to gather information on cross-cultural end of life issues for the Commission on End of Life Care. Health Advocates, a cross-cultural consulting organization, helped to organize and conduct the interviews. Those interviewed included members of African American, Native American, Hispanic, Hmong, African, Asian and Eastern European communities. The people interviewed encompassed a variety of professions, including medical doctors, religious leaders, nurses, chaplains, community advocates, and consumers.

Questions for Minority and Immigrant Community Representatives

• What is your community’s idea about what the last stage of a person’s life should be like?

• What assistance from United States health care would help in providing this kind of care for a person in your community?

• What problems do you know about for people in your community in receiving the best end of life care?

• What are the most important things health care providers should know about end of life care in your community?

• What should be done to plan for and create better health care systems for people in your community at the end of their lives?

Persons of diverse ethnic and cultural backgrounds generally prefer to have health care providers ask them about their beliefs and attitudes. Our cross-cultural interviews revealed several findings including the following:

• Some cultures have a strong belief in preserving the body through the use of aggressive treatment.

• Some cultures view death as a natural and important time of life and believe that pain and suffering should not necessarily be avoided at such times.

• Some cultures take a holistic approach to health care in general and prefer to treat the "whole person" as opposed to a disease or illness within the person.

For most cultures, a good death involves remaining at home surrounded by family and friends. Some patients may fear the hospital and other institutions and prefer to receive care from those who love them. Hospice services are acceptable to most cultures as long as they are sensitively delivered with respect to the individual’s beliefs and values.

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"Families are very close and extended. The community really cares for its own, and most people prefer to die in their own homes with their family there to give care."

~ Latino interviewee

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Grieving varies not only within cultures but on the individual level as well. Some cultures have specific grieving practices and beliefs that the community generally adheres to. For example, within the Hmong community grieving and funeral activities take place twenty-four hours a day for a week after a person dies. After the week of mourning ends, so does the expression of grief. Some beliefs about the end of life and life after death, such as reincarnation, affect grieving and the amount of time a person will grieve publicly over a loved one.

Discrimination still occurs on many levels for many minority and immigrant individuals. Interviews within every culture stated that respect and equal treatment are desired from the health care system.

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"Hispanic people want to die with dignity and to be respected as human beings and treated the same as everyone else."

~ Latino interviewee

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The lack of professionals from minority and immigrant communities was identified by nearly all cultural groups as a problem that affects a person’s trust in the health care system. Many cultures would prefer to have health care provided by a person of a similar ethnic or cultural background.

A general mistrust of Western medicine exists in some cultural groups. The size and nature of health care systems today often prevent the formation of relationships between health care providers and patients. Personal relationships were identified by some interviewees as vital in attaining trust in the health care provider and Western medicine as a whole. Other interviewees said their community generally has a high level of trust in the United States’ health care system, believing that Minnesota’s providers are very compassionate towards persons without insurance.

Religion and spirituality are important to some cultures in general and to many individuals specifically at the end of life. Individuals prefer to be asked about their religious or spiritual preferences by their health care provider.

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"A devout Muslin believes that your life is entrusted to you by God and that you should do everything in your power to preserve it."

~ Somali interviewee

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Western cultures place emphasis on individual autonomy when it comes to making decisions. Many cultures do not approach decision-making in this way. In some cultures, decisions are not made on an individual basis. For some patients, health care options may be decided through an elder male within a family such as a father, husband, or son. For other patients, decisions might be made through a community framework in which certain members of the extended cultural community, such as a religious leader or community elder, are called upon to make decisions for or with a patient.

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"Talk to the family without the patient present – talking to the patient will only cause them to become depressed. The clan will make their decisions for them with the doctor."

~ Hmong interviewee

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Telling a patient they are going to die or openly and frankly discussing death and dying with a patient and their family is considered inappropriate in many cultures. Beliefs range from, "What good would it do to tell someone they’re dying?" to, "Telling someone they will die will cause depression and prevent them from getting well." Some cultures prefer not to discuss the possibility of death at all. Other cultures might have family members openly discuss death and dying with health care providers but shield their loved one from the frankness of the discussion. Even though patients and families from minority and immigrant cultures often do not want to discuss death and dying, they still want to be informed of the seriousness of their illness and treatment options in a culturally-sensitive discussion.

Interviewees identified the lack of trained medical interpreters as a serious problem. Interviewees noted that health care providers often seem reluctant to use interpreters and providers sometimes rely on the patient’s family members to translate for them.

Explanations of illness progression, prognosis, and treatment options are often not understood by patients. Words like "metastasize," "10% survival rate," "stage four," and "failed therapy" represent common medical language that could be interpreted in multiple ways by a patient. This problem is not restricted to minority and immigrant populations.

Lack of information about all aspects of health care, including preventative treatments, treatment options, hospice, palliative care, and disease progression, is a prevalent problem within some cultures, particularly within immigrant communities where English is not the patient’s native language. For example, nearly every interviewee said that hospice as a program/benefit was either unknown or not understood by a majority of their community.

In many cultures the ideal situation is one in which the family provides all of the care for the patient. Having a stranger care for a family member—either in a hospital, nursing home or at home—may be considered offensive to some cultures.

Such non-medical services as homemaking, meals on wheels, or personal care attendants are generally considered desirable services, and patients and families would like to be informed of services that would be available to them. According to interviewees, some cultures may object to social work services due to a history with social work programs and frustrations from past experiences.

Nearly all minority and immigrant communities face issues around lack of money or insurance. Many individuals from minority and immigrant communities are uninsured or poorly insured. This prevents patients from accessing many of the available end of life services. For example, the Indian Health Service, which insures and provides health care on Native American reservations, does not offer the same level of home care and hospice services that other health care systems provide (IHS, 2001).

Even when insurance is available, significant financial burdens may be imposed on family members for the care of their loved one, either in time constraints that prevent a caregiver from going to work, or in the financial cost of employing professional caregivers. Although these financial problems are not limited to minority and immigrant communities, their needs tend to be greater than those of the majority community due to their greater likelihood of living below the poverty line.

Poverty rates in Minnesota by race/ethnicity (KFF, 2001):

9% White
38% Black
35% Hispanic
5.5% Asian
39% Other

Rate of non-elderly uninsured in Minnesota by race/ethnicity (KFF, 2001):

9% White
20% Black
23% Hispanic
15% Other

Definition: Persons in poverty are defined as those who make less than 100% of the Federal Poverty Level (FPL). The federal poverty level for a family of three was $13,290 in 1999 and $14,630 for 2001.

In order to assure access to end of life services for minority and immigrant communities, providers and communities should partner to:

• Develop informational materials for minority and immigrant communities. This includes culturally-sensitive translated materials on such topics as advance care planning, hospice, grief and community services

• Training medical interpreters and health care professionals who service minority and immigrant communities on end of life care

• Develop, implement and evaluate a cultural assessment tool for health care providers. This tool would help those who provide care to understand patient and family values and beliefs, communication needs, caregiving needs, and decision-making style.

Improvement in care for minority and immigrant communities requires a multi-dimensional approach. Like the majority community, most prefer to remain at home, cared for by their families. For this to happen, health care providers need to be culturally sensitive when approaching end of life issues, patients and families need to have appropriate and understandable information, and the spiritual and cultural beliefs of each community need to be respected.