Oct 10, 2016
By Shira Klapper, Senior Writer/Editor
Long-accepted practice in Sri Lanka is for doctors to share a patient’s cancer diagnosis, treatment options, and prognosis only with family, and to hide the information from the patient. This practice comes from a deep-rooted cultural belief that family should protect the patient from distressing news, safeguarding him or her from carrying the emotional burden of disease. Wishing to honor the family’s wishes, doctors in Sri Lanka have followed the practice of withholding information from the patient, except in cases when the patient insists on knowing the details of the illness.
However, in the past few decades, many doctors from Sri Lanka have been trained in the West, where they have assimilated the value of being transparent about a patient’s health care status. Many of these doctors began to wonder if there was a way forward for Sri Lanka that would honor families’ wishes and expectations while also being straightforward with patients. This question led Chrishanthi Rajasooriyar, MD, MBBS, along with colleagues from Sri Lanka and Australia, to carry out a study that used qualitative interviews to ask: What are patients’ and families’ expectations in regards to receiving information about diagnosis?
The study, “Breaking Bad News in Ethnic Settings: Perspectives of Patients and Families in Northern Sri Lanka,” published in the Journal of Global Oncology (JGO), August 10, 2016, carried out interviews with 20 patients and 20 family members from the Tamil ethnic group in northern Sri Lanka. The study found that an overwhelming 95% of patients professed a desire to personally hear their cancer diagnosis from medical staff, whereas only 45% of family members believed that the diagnosis should be disclosed to the patient rather than to the family. The most common reason family members cited for wanting the diagnosis to be told to them, rather than the patient, was fear that the patient would become upset.
Commenting on these findings, Dr. Rajasooriyar said, “I never expected that 95% of the patients would say they want the treatment diagnosis, options, and outcomes to be discussed with them. Going into this study, I felt that given the culture, the traditions, and religious background of Sri Lanka, we couldn’t just translate Western practice onto local culture, but in the meantime I also felt that it wasn’t right not to tell anything to the patient. This study might show a way forward in that we can now educate families about the patient’s wish to know the diagnosis.”
When Doctors Don’t Share Diagnoses, Patients Turn to Google
In interpreting the results from the study, Dr. Rajasooriyar cited a technology that often comes up in discussions of cultural disruption: the internet.
“In the old days, people rarely had access to information, and since most medical information was in English, and most people in Northern Sri Lanka don’t speak English, patients had no way of finding out what was wrong. But the internet changed everything. Now, everyone has access to information, and in their native language. So even if we don’t tell patients the diagnosis, they’re going to enter in symptoms and find out on their own.”
Changing Practice in a Culturally-Appropriate Way
As far as next steps, Dr. Rajasooriyar said that medical schools and other schools that train health care providers in Sri Lanka need to emphasize skills on delivering bad news in a way that is culturally appropriate for the cultural context. This will mean including family in all discussions of diagnoses—while also making sure to honor patients’ wishes to know information about their illness.
To change the culture, doctors are not the only ones who will need education on this topic—Dr. Rajasooriyar is working with medical students, as part of their community service projects, to create five- to ten-minute videos geared towards families about the importance of sharing diagnoses with patients; the videos will be played in clinic waiting rooms.
For now, Dr. Rajasooriyar is hopeful that cultural practice will change.
“It will take education and some time, since it’s not very easy to suddenly shift someone’s mindset, but eventually, one day, things will change.”
Chrishanthi Rajasooriyar, MD, MBBS, is an oncologist at Jaffna Teaching Hospital, in Jaffna, Sri Lanka.
Abstract of the original JOP article.
PDF of the original JOP article.
Rajasooriyar C, Kelly J, Sivakumar T, et al. Breaking bad news in ethnic settings: perspectives of patients and families in northern Sri Lanka. J Glob Oncol. Epub August 10, 2016.
The Exclusive Coverage series on ASCOconnection.org highlights selected research from JCO, JGO, and JOP, with additional perspective provided by the lead or corresponding author.
@ 2016 American Society of Clinical Oncology
Muhammad Arif, MD
Oct, 13 2016 6:28 AM
Its good to know that we are not a unique phenomenon here in Pakistan. We have seen that if patients know the diagnosis, they are less anxious and more receptive to treatments and face less trauma.But its age old taboo thats been never addressed on national level. It will take lot of education to overcome it.
Antonella Surbone, MD, PhD, FACP
May, 15 2017 3:38 AM
This most interesting piece on truth telling in Sri Lanka reminds me of the situation in Italy, where I grew up and studied before coming to practice in the US in 1985. In 1992, I wrote a piece for JAMA about how Italian cancer patients were kept in the dark or offered half truths, even when treated at Cancer Centers. At the time, I stressed that, while in the Anglo-American culture 'autonomy' was synonymous with 'freedom', in Italy it was rather synonymous with 'isolation'. In fact, like in Sri Lanka, the Italian society was based on family and community values, rather than on individual values and rights as the US society. Consequently, the role of families was to 'protect' the patient from painful news, and doctors took active part in this paternalistic protective stance. I remarked that cancer patients could not be unaware of their illness, since they were the ones suffering from the cancer or its treatments, and eventually dying.Yet a conspiracy of silence took place, and all involved persons pretended not to know. This, however, was hurting patients, in my opinion, and a cultural change was needed.
Dr. Edmund Pellegrino, one of the founders of bioethics, wrote an insightful editorial on how cultural norms influence our understanding and application of the principles of autonomy and beneficence in medicine. Since then, I have studied in depth cultural differences in truth telling and communication and continue to do it.
In Italy, informed consent has been mandatory for at least two decades for all medical procedures and treatments. Yet, many cancer patients are still not told the truth about their diagnosis and even less about prognosis, mostly because families often ask the oncologists to withhold information because their sick relative 'could not withstand the news'. Families make important decisions, including end of life ones, instead of patients.
In the past few years, I have spent some time back in my Country and have taught clincial bioethics to nurse students at their third year of the Nursing Degree Program or to older nurses getting a PhD in Nursing. I always ask my students to present and discuss clinical cases that had presented an ethical dilemma for them: the vast majority is about families and doctors not telling the truth to patients, especially older ones, while patients keep asking nurses to know about their illness and prognosis. In Italy, nurses are bound by their Professional Code not to diclose any information to patients: only doctors can deliver information.
This is to say that, indeed, changing cultures is way more difficult than modifying norms. I believe the only way is for us, as oncology professionals, to always put our patients first, by respecting their cultural values and norms, but also by afostering their autonomy and active involvement in all decisions about their health. Sometimes, this is best accomplished through verbal information. At other times, we need to find alternative and creative ways to bypass the conspiracy of silence without imposing our western values onto still unprepared patients.