End of Life - The Role of Culture and Diversity

Many factors determine how a person views the process of death and dying. One of these many factors is culture, a system of shared ideas, concepts, rules and meanings that guides the way people live, and how they choose to die.

Between and within culturally diverse groups, there are enormous differences in grieving customs, beliefs about death, and practices for end of life care. For these reasons, it is important not to generalize about any particular practice based on culture alone. Persons may have totally conformed to the “American” way of death, or be fully immersed in the customs of their homelands. This can be a strong source of tension in the family – it can also be a primary source of confusion to congregational nurses.

The American Psychological Associationiv states that in the United States, most people value autonomy, independence, self-control, and individual choice during the death and dying process. The Association states that these values assume the individual:

is the primary decision-maker
wants to be in charge and has the power to make whatever choice is desired
has a clear understanding with the physician about diagnosis, prognosis, and options
has the finances to utilize the different options offered
is competent to make choices
values discussing and planning for death
has spiritual beliefs that do not emphasize divine interventions, and allow for choice regarding end of life

However, you may have congregational members who have differing cultural, ethical or religious beliefs regarding end-of-life decisions. This will shape important decisions around life support, acceptance of medical diagnosis, who will make decisions, and where the death should take place. Examples of cultural differences include:

placing value on protecting others from negative information, so they do not talk about dying for fear it will bring about death
viewing death with a sense of anticipation in honor of a life well-lived
permitting less individual choice by requiring the eldest son, a spiritual guide, or a clan leader to make decisions
valuing aggressive and all life-sustaining treatment, or no treatment at all
viewing hospice care as compassionate treatment, or believing that hospice and palliative care mean that medical treatment is being denied
requiring women to rely on the advice on male authorities only (including family members and professionals)

For these reasons, you may find that talking to individuals about end of life options is especially challenging when your congregational members are multicultural. Issues that will be particularly important for you to examine include:

Methods of communicating, including privacy needs, disclosure and consent
How individuals make decisions, including when the patient and/or family need to be involved
Accepted concepts of illness, pain, and other symptoms
Views of death and dying
Customs surrounding death, burial or cremation, and grieving
Attitudes about medication (including herbal remedies) and nutrition
Spiritual matters and the rituals attached to them

Access to End-of-Life Care, an organization devoted to bringing multiculturalism to the care of the dying, has these tips for health care providersv:

Be sure what you say has been understood. The response of “yes” to a question does not necessarily mean that the individual and loved ones understand what you have said. Instead, it may mean, “Yes, I heard you.” To make sure you are understood, ask the patient to explain what you have said back to you.
Some cultures defer to the authority of health care professionals, and may not feel free to question you. These individuals may be reluctant to establish sustained eye contact with an individual perceived to be an authority figure, and will say "no" to your questions, “are you in pain” or “do you have any concerns” to avoid embarrassment.
Some cultures think that information in the form of bad news gives them power; others believe it causes lost hope and may hasten death. It is important to ask specific questions to the individual who is dying and the family about their beliefs and practices. These would include decisions concerning herbal medicines, alternative healing practices, privacy, modesty and physical touch.
To facilitate negotiation of cultural understanding, listen to the person's stories, ask specific questions, and get comfortable interacting with their loved ones. Build a supportive, trusting relationships based on honesty and mutual respect.