End-of-Life Care: Relaying a Terminal Illness

“Every culture surrounds death with specific rituals to assist the dying and the bereaved through this final life transition.”
—Kagawa-Singer, 1998

Traditionally, it is believed that discussing death will “unlock the gate of the evil spirits,” causing the person to die prematurely (Gerdner, Xiong, & Yang, 2006), or that speaking the words can cause death because words have power, or that telling the truth directly will cause poob siab or soul loss (Bliatout 1993; Culhane-Pera and Xiong 2007). Hence, talking about death directly can be considered a taboo, while talking about death indirectly is culturally acceptable. It is imperative that nurses find respectful and appropriate ways to tell an elderly person that they have a terminal illness.

Recommended Steps to Avoid Pitfalls

We recommend that you use the following generalities, while asking patients and their family members about their preferences, in order to avoid pitfalls.

  1. Talking about the possibility of a terminal diagnosis
    When you are contemplating that a diagnostic test may result in a terminal diagnosis, you could say:

“I am not sure what this test will show. I am concerned that it could be a serious illness. If it is not serious, we will all be happy for you. But if it is serious, who do you want me to talk with? We could have a family conference; which family members would you want to be present? If we had to discuss invasive options, who do you want to make those decisions?”

  1. Talking about death and dying
    Prior to death, it is inappropriate for practitioners to directly say
  • To the patient: “You will die”,
  • To the family: “Your mother only has two weeks to live.”

Although providers find it common practice to explain to families about the life expectancy of a loved one, it is experienced as a curse and disrespectful to give an approximate time frame unless specifically asked.

To convey that a person will not have long to live, a Hmong person might say :

  • “Nws txoj sia tsis ntev” (Her/ his thread of life is not long, or s/he will not have long to live);
  • “Tej zaum nws nyob tsis taus ntev” (Probably s/he does not have long to live)
  • “Nws nyob tsis taus txog 120 xyoo”. (“She cannot live to be 120 years old.”).

This phrase is derived from a Hmong folk tale that identifies 120 years as the ideal age before the soul begins its journey to yeeb ceeb for reincarnation (Gerdner, Cha, Yang, & Tripp-Reimer, 2007).

To convey that medical and nursing actions can no longer keep patients alive, providers can say, “The sky is getting darker and darker and the sun seems to be setting more and more.” All of these expressions can convey the same meaning as talking about death directly without making patients and families feel that providers want death to occur.