Most doctors hesitate to begin a serious conversation with their deathly ill patients about what the final days will look like, say researchers at the Stanford School of Medicine. The new study, which surveyed medical residents during their final year of training, finds this to be especially true when a patient’s ethnicity is different than a doctor’s own.

The survey took place between the years 2010 and 2012 at two academic medical centers: the Veterans Affairs Palo Alto Health Care System and the facility that is now called Stanford Health Care. The 84 percent response rate included questionnaires completed by 1,040 medical residents. While staff representing 11 specialties participated, most of the doctors were in internal medicine (29 percent), surgery (19 percent), or pediatrics (14 percent).

Quite simply, the survey asked the doctors if they had encountered any difficulties conducting effective end-of-life conversations with seriously ill patients and families. If yes, they were to list the top three problems they faced. Respondents also were asked to explain whether (and to what extent) it was a challenge talking with people from a cultural or ethnic background that differed from the doctor’s own.

“I knew that the percentage of doctors who encountered barriers for having end-of-life conversations would be high, but I was surprised by how high,” Dr. V.J. Periyakoil, a clinical associate professor of medicine and lead author of the study, stated in a press release.

Shockingly, 99.99 percent of the participants report difficulties. These are the top six:

  • language and medical interpretation issues
  • patient's and/or family's spiritual beliefs about death and dying
  • doctor's ignorance of patient's cultural beliefs, values, and practices
  • patient's and/or family's cultural differences in handling the truth and making decisions
  • patient's and/or family's limited health literacy
  • patient's and/or family's mistrust of doctors and the health care system.

Clearly, all of these difficulties are more likely to impact patients who do not speak the same language as the doctor. That said, even fluent English speakers commonly misinterpret doctor' words, the research indicates. Oncologists, for example, will use the word "cure" to denote five years of cancer-free survival, while patients and families quite simply believe "cure" means complete eradication of cancer.

Ultimately, Periyakoil places the burden to change not on doctors but on patients. Galling and unfair though this advice may seem, it is the patient’s last days that are at stake, and, dying though they may be, they must step up and be heard.

“Patients need to make it easy to have these conversations,” Periyakoil said, further explaining that doctors are “not paid to have these conversations.” To help start the much-needed discussion, she has created a letter template, available here, for patients to fill-in and share with their doctors.

Is avoiding pain your main priority? Do you want every available medical intervention regardless of the effect on your quality of life? Do you want the unvarnished truth about how many days you have left? Tell your doctor, says Periyakoil, so that you may end your precious life as you wish. Make no mistake, it matters solely to you and your loved ones.

Source: Kraemer H, Neri E, Periyakoil VK. PLOS ONE. 2015.