Culture at End-of-Life
Posted on 07/17/2015
Culture at End-of-Life
Cultural diversity shapes many aspects of life, including an individual’s decisions regarding healthcare. Cultural competency matters when caring for patients through the healthcare continuum. Culture influences end-of-life perceptions about advanced directives, reactions to illness, treatment decisions, feelings about death and dying, and rituals and ceremonies at the time of death.
Promoting cultural diversity and cultural competence requires asking two important questions: How does culture influence end-of-life care? How can providers create culturally sensitive approaches in end-of-life care to diverse populations of patients and families?
Craig Borchardt, President/CEO, Hospice Brazos Valley says, "For our hospice team, attentiveness to cultural diversity is as important as any other aspect of patient care. Comfort involves not only the management of pain and other symptoms but also the recognition that honoring the patient's cultural understanding is crucial to a meaningful end-of-life experience."
Where to start?
There is no training which teaches competence in culture however there are basic skills and sensitivities you can utilize. It helps if you know your attitudes, areas of ignorance, prejudices, assumptions, and cultural biases. Be aware of your own experiences of loss and understand your experience is not central to understanding experiences of others.
Cultural factors can significantly influence patient and family decisions. Culture may impact the following key aspects:
• Perceptions of health and suffering
• Perceptions of death and dying
• Perceptions of healthcare providers, healthcare and hospice
• Religious and spiritual beliefs
• Communication and forms of expression
• The role of family, relationships and family involvement
• Problem solving and decision making behaviors
What to say?
The passage of the Federal Patient Self Determination Act of 1990 created some significant professional, clinical and ethical challenges in dealing with culture. Truth telling is highly regarded in American society and is clearly reflected through the Patient Self Determination Act emphasizing patient informed consent. However, many cultures may value nondisclosure when it comes to illness or death.
Some reasons for nondisclosure related to cultural beliefs:
• Discussion about illness or death is disrespectful and impolite
• Open discussion about illness or death may provoke unnecessary depression and/or anxiety
• Disclosing information may destroy the patient’s hope
• Talking about an illness makes it real because of the power of the spoken word
Who makes decisions?
Decision making is another challenging area at end-of-life. Across diverse cultures greater value may be placed on interdependence rather than independence and collective instead of individual decision making practices. Families supporting a collective decision making process may often take information about the patient’s illness and make decisions with little or no input from the patient. In other instances, patients and families who have respect for authority may look to the expertise of the healthcare team to make the decision.
Approximately 15% to 25% of people in the general population have advance directives. Culture plays a role in the execution of advance directives. The low rates of completion are often related to mistrust of the healthcare system and healthcare disparities. Without a directive certain decisions can sometimes lead to contentious conversations on issues such as:
• Withholding or withdrawal of life-prolonging treatment under seemingly futile conditions
• Using hospice services
• Embracing organ donation and autopsy
Providing culturally competent care at end-of-life can be a significant undertaking for even the most compassionate, knowledgeable, and skilled healthcare professional. Genuine and respectful conversations with patients and families about various dilemmas are essential to understanding cultural differences and creating collaborative partnerships. Sincere curiosity of diverse cultures adds value in understanding the patient’s cultural beliefs regarding end-of-life care. When helping others at end-of-life it is important to recognize that dying is both a personal and cultural experience.