Brigham Clinical Ethics Case Review is published by the Brigham’s Office of Clinical Ethics. Each issue highlights a Brigham case that posed an ethical problem for a patient, family members and/or caregivers, leading to an ethics consultation and Brigham Ethics Committee discussion. Please note that because cases are based on actual ethics consultations, some details may have been altered to protect patient privacy and confidentiality.
“Life and Death are Not My Decision”
Reconciling Cultural and Religious Perspectives in End-of-Life Decision Making
The patient was a 26-year-old woman from the Middle East with lymphoma (a cancer that begins in the lymphocytes — the infection-fighting cells of the immune system). First-line treatments had not been effective, and the cancer had spread to some of her organs. Her only remaining option was a stem cell transplant, which was not available in her home country. Her family arranged through the Brigham Health International Patient Center (International Center) for the transplant to take place at the Brigham. The patient’s younger brother and sister accompanied her to Boston and spent their days at her hospital bedside, regularly updating their parents back home. As the family only spoke Arabic and were devout practitioners of the Muslim faith, the International Center provided interpreters to assist with communication and act as cultural liaisons. The Imam (worship leader of a mosque) from Brigham’s Spiritual Care Services also visited frequently to offer emotional support and spiritual guidance specific to the family’s religious beliefs.
Despite all efforts to reverse the course of her disease, the patient’s health continued to decline, and she began to develop multiple-organ system failure. It was the consensus of her treatment team that she was actively dying, and that further interventions would cause more harm than benefit. The team explained this to the brother, the patient’s designated health care agent, and recommended terminal extubation (withdrawal of the breathing tube and mechanical ventilator that were keeping her alive). The brother declined this medical recommendation and asked that all interventions be continued “until she is better.” He said that decisions about life and death were “in God’s hands.” He also felt a deep sense of responsibility to his family, knowing that they expected him to do everything possible to save his sister’s life.
The team did not feel comfortable overriding the brother’s wishes. An ethics consultation was requested to address this tension and consider the limitations of treatment that would be ethically appropriate in these circumstances.
Many Boston-area teaching hospitals, including the Brigham, are seeing an increase in international patients, who are drawn to these institutions by their global reputation for excellence. These patients come to us from a broad spectrum of beliefs and traditions which often contrast with the expectations regarding health care, particularly end-of-life care, in the U.S.
Patients from the Middle East who follow certain Islamic teachings generally place emphasis on the role of God, physician and family in guiding the decision-making process (Moazam 2000). Physicians are viewed as an instrument of God’s mercy, vested by God with the power of healing. It is expected that physicians will act as authority figures and make decisions about treatment and its limits. This is understood as a physician responsibility and an expression of caring (Moazam 2001). In contrast, in the U.S. medical system, which places a higher value on patient autonomy, taking such a directive approach could be viewed as an intrusive act of paternalism (Moazam 2000).
Another difference is the degree of family involvement in patient care decisions. In the U.S., there is an emphasis on personal decision making, which can be extendedto a health care proxy agent if patients become too ill to make decisions for themselves. In contrast, it is less common in Muslim societies for physicians to talk about the details of care directly with the patient; this is particularly true at the end of life, when candid discussions about prognosis are understood to cause undue distress and despair. Rather, physicians discuss the patient’s condition with family members and consider their input in making treatment recommendations. “Family-centered decision-making works in tandem with an active, directive role assumed by the physician that stresses the principles of beneficence and nonmaleficence rather than patient autonomy” (Moazam 2000).
The challenge in this case was to find a way to reconcile these seemingly incompatible models of decision making and the ethical conflict that flowed from them. The team wanted to show respect for the family’s faith-based and culturally consistent desire to “do everything” for the patient; at the same time, they felt responsible for avoiding the harm this could entail.
During the ethics consultation, there was lengthy discussion about the patient’s clinical situation and the family’s religious and cultural norms, values and expectations regarding end-of-life care. The group recognized the importance of communicating to the brother and sister that they had done everything they could to save the patient, understanding that this narrative would be vital to the family. They also discussed the hazards of interpreting “doing everything” literally, and that this does not mean deploying all available interventions. Rather, clinicians have a responsibility to use their professional expertise, experience and judgment to make decisions about treatments that are medically beneficial, the options for which narrow at the end of life. “As the patient approaches death, the clinician plays a larger role in decision making, not by taking control, but rather by identifying viable medical options” (Roeland et al. 2014). Reframing “doing everything” to “doing everything clinically beneficial,” and only offering potentially beneficial treatments to a dying patient, reflects the responsibility of clinicians and avoids inappropriately burdening families.
Continuing this line of thought, there was consensus that the team should not offer treatments they did not think would benefit the patient in the face of her impending death. The group agreed on the following recommendations:
- To communicate the plan of care with the patient’s brother and sister, using the language of “doing everything possible that will help the patient” to convey the intended message
- To offer support to family members living in the home country via Skype or telephone
- To be open to discussion about the interplay between clinical judgment and spiritual beliefs
- To continue involving the Imam for emotional support and spiritual guidance specific to the family’s religious beliefs.
Shortly after the ethics consultation, team members met with the brother and sister to review the care plan, which was to continue current interventions and manage any pain or discomfort, but not to escalate treatment or attempt cardiac resuscitation because her body was no longer responding to treatments and she was dying. The care team reiterated that they had done everything possible that would help her, and offered to speak with family at home. The patient’s brother and sister thanked the team for all that they had done, but declined conversation with their overseas relatives. The patient died several days later and the International Office supported her siblings until their return home.
Moazam, F. “Families, Patients, and Physicians in Medical Decisionmaking: A Pakistani Perspective.” Hastings Cent. Rep 2000:30(6);28-37.
Moazam, F. “Reconciling Patients’ Rights and God’s Wisdom: Medical Decision Making in Pakistan.” Responsive Community 2001:11(2);43-51.
Roeland, E et al. “When Open-Ended Questions Don’t Work: The Role of Palliative Paternalism in Difficult Medical Decisions.” J Palliat Med. 2014:17(4);415-420.
We welcome your feedback about Brigham Clinical Ethics Case Review. Please email your questions and/or comments to BWHEthicsService@partners.org. The Ethics Service is available 24/7 by pager to all Brigham clinicians without a physician order, as well as any Brigham patient or family member. To learn more about ethics consults, visit the Office of Clinical Ethics website. This newsletter is primarily intended for internal distribution to the Brigham community. If you’d like to use this content for another purpose, please contact the Office of Clinical Ethics.