There are more migrants, refugees, and immigrants adrift in the world today than at any time in the recent past. Doctors and hospitals must care for people from many different cultures, countries, and religious backgrounds. We sometimes find our own deeply held beliefs and values challenged. In this “Ethics Rounds,” we present a case in which a Pakistani immigrant family faces a tragic medical situation and wants to deal with it in ways that might be normative in their own culture but are aberrant in ours. We asked the American doctors and 2 Pakistani health professionals to think through the issues. We also invited the father to talk about his own experience and preferences. We conclude that strict adherence to Western ethical norms may not always be the best choice. Instead, an approach based on cultural humility may often allow people on both sides of a cultural divide to learn from one another.
- SSPE —
- subacute sclerosing panencephalitis
There are more migrants, refugees, and immigrants adrift in the world today than at any time in the recent past. Many people are insulated from the culture clashes that result from these dislocations. Doctors and hospitals are not. As we welcome the opportunity to care for people from many different cultures, countries, and religious backgrounds, we sometimes find our own deeply held beliefs and values challenged. In this “Ethics Rounds,” we present a case in which a Pakistani immigrant family faces a tragic medical situation and wants to deal with it in ways that might be normative in their own culture but are aberrant in ours. We asked the American doctors and 2 Pakistani health professionals to think through the issues. We also invited the father to talk about his own experience and preferences.
A 6-year-old, previously healthy boy presented with ataxia, myoclonus, and cognitive decline. His symptoms had begun 3 months earlier with poor fine motor coordination and ataxia that had progressed. He ultimately received a diagnosis of subacute sclerosing panencephalitis (SSPE), a late complication of measles infection in infancy.
SSPE is a progressive neurologic disease that has no treatment and no cure. Death is almost universal 1 to 3 years after onset, with mean survival of 18 months. The late stages include seizures, dementia, and a vegetative state.1
The parents immigrated to the United States from Pakistan 8 years earlier. Both parents spoke English fluently. They had 2 other children at home. The father was at the hospital more often. The mother was at home taking care of their other 2 children.
After the diagnosis of SSPE was made, the father requested that his wife not be told of their son’s diagnosis, prognosis, or management plan, including possible upcoming procedures (gastrostomy tube, tracheotomy). The father said that the bad news was so painful to him, he wanted to shield his family and that he would break the news to his family when the time was right. “I know my wife better than anyone,” he said. In the meantime, he requested that all communication be with him only and that he would make all medical decisions.
This request caused moral distress and unrest among the medical team. One attending wrote in the chart that we had an “obligation” to ask the mother to come to the hospital so that we could tell her about her son. Others thought we should at least ask the mother what she wanted to know. There was a sense of urgency because his rapid deterioration raised concern about a more fulminant course that could mean death within months.
How should the health team respond to the father’s request?
Donald Cochran, MD, Comments
The key question here is this: Should we tell the mother what we know against the father’s wishes? The providers should determine why he is making the request by asking, “What are your concerns about informing your wife?” One of the father’s stated reasons for the request was that he found the sad news painful and hard to bear. He wanted to spare his family the pain for the time being. His request was for more time and to let him tell his wife in his own way. He needed to think about how he would tell her, and he needed to build up the courage to do it. He reminded us that he knows his wife better than anyone. He may have had other experiences with her that led him to believe that the news should be handled delicately and would be handled best by him. We may not be privy to the mother’s medical history (particularly with mental illness) that would make the father even more protective. The mother could see that her son was deteriorating rapidly. The father recognized that his progression led to a sense of urgency from the medical team, but he was consistent in his request for more time.
I think there may have been an assumption that the father was acting in a stereotypical Muslim male manner. I never got the impression that religious or patriarchal reasons were behind the request. It seemed to me that he was lovingly trying to protect his family. He showed respect to the female physicians. He never threatened the female attending’s authority or questioned her competency. In other words, he never acted as if his authority as the male head of household would be threatened if his wife were told. So putting an intention on the father’s request without exploring the reason for his request is wrong. What would be the harm of not telling the mother at that moment?
We assume that she wants to know. That assumption is a deeply embedded cultural belief. Mothers in our culture would want to know. However, I think that asking the mother what she would want to know would be going against the spirit of the father’s request. The family unit is paramount in Pakistani society. By asking, we would be undermining the usual family interactions if the medical team inserted themselves into a family’s decision-making process.
Instead of making assumptions about a culture that I do not know much about, I think that the proper approach would be to respond as I would to any other father who made such a request. I would ask him about his concerns with informing his wife about their child’s illness, and I would tell him my concerns about not informing her.
If the father had expressed that in his culture, the men make all the decisions, then we should respect that. Doing so would certainly be more challenging for some providers to accept, because it goes against our own cultural norms. This is an American hospital, but do we have the obligation to insert our values, based on our own culture and traditions? I am not sure what would be gained.
Striking the right balance between ethical norms and family needs requires skills in the art of medicine. The nuances of communicating and interacting are taught by experience. I would never lie to the mother or refuse to answer if she asked a question. But I would feel comfortable listening carefully to both father and mother and allowing truths to be revealed, as they inevitably will be, on their timetable rather than ours.
Sarosh Saleem, MBBS, MBeth, Comments
A pluralist, cosmopolitan society is a society which not only accepts difference, but actively seeks to understand it and to learn from it. In this perspective, diversity is not a burden to be endured, but an opportunity to be welcomed.Aga Khan IV, The Samuel L. and Elizabeth Jodidi Lecture at Harvard University Cambridge, Massachusetts, November 2015.
In a diverse, pluralistic culture, people hold very different beliefs. Such cultures thrive when we learn to respect and celebrate not only the values and customs we share but also our differences. But it is important to understand the basis of different beliefs.
This case presents a contrast of cultures and values between the health care providers and a patient’s family. The concern raised by the providers is genuine. The custom, usual practice, and law in their culture all dictate that they should share medical information with both parents and involve them both in decision-making. The father’s request to withhold significant medical information about his child’s illness and progress toward death challenges this approach to doctor–family communication.
Before jumping to any conclusion, it is important to understand the sociocultural background of the family. Pakistan is a nonsecular, patriarchal society with its roots embedded in Islamic cultures and traditions. The Islamic religion gives equal rights to men and women. However, men have additional physical and economic responsibilities toward their families. Culturally, as well, men assume the roles and duties as head of the family and are considered responsible for making important decisions while caring for wives and children.
I assume that this Pakistani family is Muslim. In evaluating the father’s request, it is critical to distinguish between religious practices and cultural norms. The Quran, the central religious text of Islam, describes equal rights of men and women, portraying husband and wife in complementary rather than competitive roles. Sunnah (the life events and deeds of the Prophet Muhammad, peace be upon him) endorses shared decision-making by husband and wife in all matters of life. Men and women have equal social, legal, and moral status as human beings, according to Islam.2 The equitable differentiation between their roles and responsibilities in the family system endows a man to the duty of supporting and protecting his wife and children.
Male dominance and authoritarianism are a strong cultural trait of South Asia, probably arising from social and cultural traditions of that region. Pakistan does have a patriarchal system, and it is customary for male family members (father, husband, brother, or son) to sign a consent form on behalf of a female patient or a child. These cultural traditions are commonly thought to be religious in nature. That is not correct, but it is a mistake made not only by outsiders but by misinformed Muslims too.
The death of a child can be devastating for any parent, anywhere in the world. Varied reactions can be expected. From a Western point of view, it may be strange and even shocking to seek to hold the news of the terminal illness of a child from the mother. From a Pakistani cultural perspective, it may be more understandable. They father may be trying to shield the mother from the shock and pain that this news may cause. In the absence of extended family, a common social support network in Pakistan, the father perhaps finds it appropriate to bear the burden of this sorrow and protect his wife for as long as he can.
The father’s beliefs and preferences do not relieve the physicians of their responsibility to share important information with the patient’s mother. It is understandable that providers feel obligated to share the child’s medical information with his mother or at least ask her how much she would like to be involved. She might willingly say that all information should be shared and discussed with her husband only. Then, her wishes should be respected. But what if she wants to know?
Communication with understanding is the key to such situations where basic social values clash. Doctors should explain to the father that, with the progression of disease, it may not be possible to hold the truth much longer from his wife. Involving a religious or spiritual leader might help him realize and accept the inevitable truth. Muslims believe in divinely destined time of death. Prayer is meaningful near the time of death. An imam might help him see that his wife will probably want to be with the child and say special prayers at the end of his life.
Sumaira Khowaja-Punjwani, CPB, MBeth, BScN, Comments
In pediatric clinical setting the most common ethical question clinicians face is “Who has authority to make decisions for children?” This case extends that question by forcing professionals to ask, “Is it ever ethically permissible to not to tell a mother about the medical condition of child when requested by the father?” The question becomes more complex in the context of a profound cultural difference between the professionals and the father. In his culture, men are expected to make decisions for their family. They are obligated to do so.
I was born and raised in Pakistan. I live and work there now. I trained in bioethics in Karachi. We studied mostly Western ethics. I have always thought that this training was inadequate to deal with the issues that arise in Pakistani culture (and probably many others). Medical professionals are trained in an ethics that assumes that “one size fits all.” As a result, we health care professionals have become mechanical in our responses to challenging cases. It is offensive to us if a patient or patient caregiver makes a choice that diverges from routine or contrasts with what we believe is in their best interest. We learn that the patient’s autonomy must always be prioritized. We learn that, in pediatrics, both parents must participate in the process of shared decision-making. In many clinical scenarios, however, these ideals are unrealistic or inapplicable. We must learn to recognize that every individual is different, and not all share the same values.
Asian family values are very different from the Western family value system. In Eastern cultures the family unit includes the extended family. Traditional gender roles are common. The family patriarch is considered to be gatekeeper of private information and routinely makes health-related decisions for other family members.3 The concept of autonomy in East and West is distinctive. In the East, decisions about family matters are made either by the elder male member of the household or by consensus of elder members of house, which usually includes the father, the elder son, or an uncle. Women and children lack absolute individual autonomy in this culture. They are considered vulnerable. Therefore, the men of the house have an obligation to make decisions for the entire family and to consider the best interest of the entire family. The man’s job is tough and demanding. He must be emotionally strong almost all the time. To do so violates human nature.
This thoroughly patriarchal approach leads to odd situations. For instance, sometimes a 25-year-old elder son will make decisions for his 60-year-old, perfectly competent mother. This model, in which men make all the important decisions, is shared by many Eastern cultures. It is a strikingly different approach from that prevalent in many Western countries. For a medical team with a different cultural orientation, it is difficult to understand the background reasoning of the father’s request in this case. For me, a Pakistani nurse and bioethicist, it is easy.
Cultural humility is the best approach to effectively address such cases. This approach focuses on commitment and active engagement in a lifelong learning process. The clinicians should enter into an ongoing dialogue with patients, communities, colleagues, and themselves, based on the principles of cultural humility.4 “In a modern world where power imbalances exist, cultural humility is a process of openness, self-awareness, being egoless, and incorporating self-reflection and critique after willingly interacting with diverse individuals.”5 The ethical principle of autonomy is focused on informed consent, shared decision-making, and each individual’s right to control what happens. The emphasis of cultural humility is to recognize power imbalances and not automatically give preference to the most powerful.
The best approach in this case is to acknowledge the father’s request and to gain his confidence by showing respect for his culture. This step should be followed by therapeutic communication to help him to learn that he needs to share information about the condition and prognosis of the child with his wife. Doctors and nurses should offer to help him through that difficult conversation. He needs to know that the medical team cannot lie to the mother, and thus they may need to dishonor his request to withhold information. For his wife to hear news from the doctors, rather than from him, would be the worst possible approach to communication in this case.
Here is the most important lesson: Cultural factors that may be initially perceived as barriers may better understood as opportunities for enhanced, personalized treatment. In this case, the medical team perceived the problem as their difficult decision about whether, or to what degree, they could deviate from their routine protocol of shared decision-making. However, if they view these cross-cultural differences as opportunities to find the best in both cultures, these perceived barriers could be incorporated into a new plan about communication. That might ultimately benefit the care of this patient, this family, and future patients and families.
The Patient’s Father Comments
I would like to tell the story of our son Z’s illness from our perspective. I wrote this story myself, but I discussed it with my wife.
Around November 2015, Z’s teacher told us that Z was struggling with his fine motor skills and that we needed to work with him to improve them. We took him to his primary doctor, and she told us that everything is normal and he would catch up with time. In February 2016, he even had a full physical examination. We were told that he was normal.
In March he started to lose his balance and fell down at times. We decided to consult the doctor again. The primary doctor referred us to neurology. We stayed for 3 days at the hospital, where they did some laboratory work and an MRI and EEG. Doctors suspected he had some form of ataxia and sent us home.
We went back to hospital after 10 days because he was falling more and could barely sit upright. He again went through numerous tests, radiographs, and an MRI. At that point he received a diagnosis of SSPE.
April was the most difficult time in our lives. We were losing our only son slowly and gradually. It was so painful for me to know what was coming next and to know that there was no cure. It was painful to know that my son would lose his sweet voice and would never be able to talk and call us Mom and Dad, that he would never be able to play soccer or watch his favorite movie, Cars, again. We would miss his hugs forever. To see your child like that and not be able to help was extremely painful.
I did not want my family to feel the pain that I was feeling. I wanted to reveal the diagnosis and prognosis at appropriate time and started mentally preparing them for the worst possible news of their lives. I know my family better than anyone else. I feared for my wife and family. I worried that my wife would not be able to bear the shocking news so soon after the initial correct diagnosis.
I am very thankful to doctors and staff for their full cooperation and support. They respected my decision of not sharing his prognosis with my family for those few days. When I realized that my wife and other family members were mentally ready to accept the terrible news and seemed to be in a state when they could handle it, I asked the doctors to share the reality with them.
I thank all the doctors and staff at Children’s, who took great care of Z and of us during his stay at the hospital.
John D. Lantos, MD, Comments
Often, ethical dilemmas initially seem to be about one thing, but analysis reveals that they are about something else entirely. In this case, the health professionals perceived the father through a distorting lens. They assumed that Western ethics about individualism and autonomy are universal and thus that the father was violating a universally recognized moral norm. That is clearly not the case. Our rules and our norms about individuality are as culturally embedded and as unique as those of any other culture. In many cultures, the family is the smallest unit of moral consideration. In those cultures, decisions are made by designated individuals within family systems. It is not clear whether 1 cultural approach is necessarily superior to another, or even what a study would look like to try to determine the safety and efficacy of either. We cannot randomly assign people to one culture or another.
However, we can recognize the need for cultural humility. An approach based on cultural humility should always start with a willingness to question one’s own beliefs and cultural norms. Is our way necessarily the best way? What could we learn from other cultural approaches? Might there be a new synthesis that would arise if we thought about the strengths and weaknesses of each approach? Carefully considered compromises based on cultural humility will often be preferable to overconfidence, intolerance, and unwillingness to listen and learn.
We thank Dr Ladan Agharaokh for assistance in describing the case. We thank the patient’s father for offering his thoughts.
- Accepted March 7, 2017.
- Address correspondence to John D. Lantos, MD, Department of Pediatrics, Children’s Mercy Hospital, 2401 Gillham Rd, Kansas City, MO 64108. E-mail:
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: No external funding.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
- Garg RK
- Omar S
- Copyright © 2017 by the American Academy of Pediatrics