Providers often must negotiate with patients and families, but how should disagreements be addressed when the discrepancy is rooted in the patient’s culture or beliefs?
The Journal of the American Medical Association published an example of such a dilemma in 2008.
“Ms. R” was a 19-year-old woman who lived in the United States for several years while her parents lived abroad. She underwent an elective cranial surgery related to complications of a genetic syndrome.
The neurosurgical procedure was successful, and Ms. R seemed to be doing well until 10 days later when she complained of an acute, severe headache and quickly became unresponsive.
Ms. R had suffered an intracranial hemorrhage. Following repeated apnea tests, she was declared brain dead.
Because Ms. R’s parents had not been able to say goodbye, she was kept on a ventilator, pending their arrival.
Her father, who held Ms. R’s durable power of attorney for health care, arrived within 24 hours of the declaration of death. He requested the ventilator be continued and asked the provider to administer a traditional Chinese medicinal substance to Ms. R.
The father explained the substance is often used in his native country for a range of conditions, including coma. He asked the treating team to combine “the best of Western and Eastern medicine” to benefit his daughter.
Providers were unsure how to proceed. Should they comply with the family’s request, even though they felt certain it would not benefit the patient’s physical condition?
This case is just one example of the kinds of issues that will be addressed at Seattle Children’s 14th annual Pediatric Bioethics Conference in July. The conference will be hosted by Seattle Children’s Treuman Katz Center for Pediatric Bioethics, the first center of its kind in the nation which aims to improve the lives of children and their families by addressing ethical questions, while also serving as a national bioethics resource for physicians, researchers and policymakers.
Here, bioethics consultant Dr. Doug Diekema, director of education in the Treuman Katz Center, discusses how we should navigate ethical disagreements related to diversity.
Q: Should physicians accommodate a family’s request for treatment, based on the family’s cultures and beliefs, as in the case of Ms. R?
A: In cases like this, the psychological benefits of accommodating a cultural request should be considered.
We should not provide false hope to families, but if an intervention not recognized as beneficial by Western medicine can provide the family with a sense that they’ve done everything possible for their child, without harming the child, the provider might accommodate it to help the family cope with the child’s death.
In the case of Ms. R, administering a traditional Chinese medicine is unlikely to cause harm, as long as the family understands the medicine is not expected to revive the patient.
Q: Should providers administer or participate in religious rituals if a religious figure is not available?
A: This is an area where the provider has some discretion. If the family has made a request and the provider is comfortable with that request, there’s nothing wrong with administering a religious ritual — such as applying oils to a patient or praying with a family. On the other hand, if the provider is uncomfortable, they have no obligation to participate.
Q: If a family requests a provider of a certain gender or race, based on their cultural or religious beliefs, should that request be accommodated?
A: There are cases where a request for a provider of a certain race or gender is not necessarily racist or sexist and deserves our respect and potentially our cooperation.
There are some cultures, for example, where modesty requires a female not be touched by a male who is not a family member. In those cases, I don’t consider a request for a female provider to be sexist.
The request is a reflection of what is culturally appropriate; it’s not because the patient thinks male providers are less competent than female providers.
Even requests that are not culturally based can be understandable. Some of our teenage patients, for example, might be quite uncomfortable being examined by a provider of the opposite sex. In those cases, if feasible, we might try to make them more comfortable by accommodating their request for a provider of a certain gender.
Finally, there may be rare cases where a patient has experienced a trauma at the hands of someone of a specific race, gender or group, and feels uncomfortable seeking care from a provider of that race, gender or group.
In those situations, it’s not fair that someone who has suffered a trauma paint the entire race, gender or group to which their assailant belongs with a broad brush, but it can also be difficult for some people to separate the trauma from the characteristics of their attacker. In those cases, it may be best for the patient that we accommodate the request for a certain kind of provider.
Q: Should cultural practices that cause a small amount of pain or harm to a child be tolerated, or should they be reported as child abuse?
A: The threshold for child abuse is not any harm, but a substantial risk of serious harm.
For example, there are cultural practices, like cupping or rubbing a coin on the skin, that does leave a mark and probably hurt somewhat, but not a lot. We see those cases often in practice and we don’t report them.
On the other hand, there may be some cultural beliefs providers might feel significantly harm a child. In those cases, we would consult with our Suspected Child Abuse and Neglect (SCAN) team and potentially call Child Protective Services.
The question is: Where do you draw the line? That is why we have discussions and debates in forums like our bioethics conference.
Q: How should providers respond to requests not to tell a child their diagnosis or that they’re dying?
A: Many Western providers are uncomfortable keeping a secret from a child when, in most cases, the child probably has a sense something bad is happening and it would be easier to care for them if we could talk openly.
But when we have a family, possibly driven by cultural beliefs, that believes telling their child the diagnosis would be harmful, that request deserves careful consideration. We shouldn’t just say, “We’re going to tell your child whether you like it or not,” but we also have to be very careful we’re not causing the child harm in keeping a secret at the family’s request.
Seattle Children’s 2018 Pediatric Bioethics Conference — When Cultures Clash: Navigating Ethical Disagreements Related to Diversity — will be held July 20 and 21 at the Bell Harbor International Conference Center in Seattle. Learn more about the conference.
