End-of-Life

End of life care is a very complicated topic. When I get older or become very sick, I will make sure to get a DNR status. I would like to die peacefully and naturally without any attempts to prolong my life for a short time. It seems that multiple resuscitation attempts can make the end of life a much more traumatic experience for me as well as for my family members. I know it is important to take care of this issue ahead of time, but in case I am not capable of making my own decisions, I would like one of my children or my husband to do it for me. My family feels the same way. They expressed a desire not to continue life support, if there is no hope for recovery and/or they are in a vegetative state. I did not include my younger son into this conversation. I don’t think he is ready to discuss this topic and he gets very emotional.

I think it is very important to provide comprehensive information to the patients and talk about their end-of-life care. According to a study conducted in 2015, patients who have end-of-life conversations with their physicians are “less likely to experience physical distress at life’s end, less likely to undergo high-intensity interventions, less likely to die in the Intensive Care Unit, more likely to receive outpatient hospice care and be referred to hospice earlier” (Periyakoil, Neri, & Kraemer). The authors identified six barriers (reported by health care providers) to the effective end-of-life conversations with diverse patients.

Barrier 1: Language and medical interpretation issues

• “Language barrier, inability to communicate with patient/family and ensure they understand the discussion.”
• “Inherent language barrier – medical terms are difficult enough for fluent speakers.”
• “It is hard to talk about sensitive topics through an interpreter.”

Barrier 2: Patient/ family religious and spiritual beliefs about death and dying

• “Religious cultural values may lead people to prefer life-sustaining treatments that we may see as futile.”
• “Reconciling religious ‘obstructions’ to a DNR status.”
• “Discussions of God and afterlife beliefs.”

Barrier 3: Doctors’ ignorance of patients’ cultural beliefs, values and practices

• “Doctors not understanding the cultural values surrounding end-of-life care for a patient with different ethnic/religious background.”
• “Cultural norms that differ from my own causing me to inadvertently offend the patient or his/her family.”
• “Not knowing how to discuss goals in a way that makes sense to someone with different views about death based on different beliefs about spirituality and afterlife.”

Barrier 4: Cultural differences in truth handling and decision making

• “In some cultures, patients may not want their diagnoses/prognoses discussed with them directly and will instead appoint a family member as surrogate decision maker. It can become difficult however, to be sure that that family member is acting in the best interest of the patient and acting with the patient’s preferences in mind vs. their own.”
• “Eliciting the personal wishes of a female from a culture in which men make all the decisions can be difficult.”
• “I think it’s fair to say that some cultures conversations about death as something to be avoided at all costs, which is not necessarily how I, as a health care provider, feel about it.”

Barrier 5: Patient/family’s limited health literacy

• “Certain medical terms may be difficult to explain in a way the patient can understand.”
• “They may not be used to the health system they find themselves in and it may be overlooked that they lack what we would consider common knowledge.”
• “Incomplete understanding of what resources/therapies that can be versus should be provided for a patient.”
• “Misunderstanding what is described by resuscitation, thinking it means we are giving up completely on treatment.”

Barrier 6: Patient/family’s mistrust of doctors and the health care system

• “Mistrust/misunderstanding of the motivations of the medical community”
• “Patients may believe that care is being “withdrawn” from their loved one because of racism.”
• “Certain cultures lack trust in the medical profession, do not believe physicians have their best interests at heart.”

It is important for the nurses to be aware of these barriers and facilitate the end-of-life conversations. Having comprehensive information can help the patients as well as their family members make reasonable decisions and avoid traumatic experiences.

References

Periyakoil, V., Neri, E., & Kraemer, H. (2015). No easy talk: A mixed methods study of doctor reported barriers to conducting effective end-of-life conversations with diverse patients. PLoS ONE, 10(4), 1-13. DOI:10.1371/journal.pone.012232