Abstract
At the request of the critical care service, our team consulted the family of Mrs. M, an elderly woman from the U.S. Virgin Islands of Latino heritage who was critically ill with respiratory distress secondary to a right main stem bronchus occlusion from tumor mass. The emergency and critical care doctors had informed her and the family that she was most likely going to die, suggested against intubation, and requested a palliative care consultation to clarify treatment goals with possible transition to hospice care. Confounding factors present at the time of the consultation included the respiratory distress, medication used to comfort the distress, hearing impairment, and English as a second language. Case management informed our team that the family would speak for the patient and would make all decisions.
Our team assessed the needs of the patient with the family who consisted of three daughters, two sons, a granddaughter, and a retired surgeon son-in-law. Mrs. M had long come to Mayo Clinic in Florida for medical care and resided with family who lived locally; however, the preponderance of family remained in the U.S. Virgin Islands. They came expeditiously upon hearing the grave prognosis, and ultimately all were present for the approximately 90-minute palliative care family meeting.
The conference was cordial, especially given the fact that the preponderance of the family arrived minutes prior to the conference with minimal time to absorb the bad news. However they were unanimous in their request that we avoid speaking about the impending death with the patient herself, expressing their concern that additional discussion was overwhelmingly anxiety-producing and not consistent with what they believed were her wishes. There was no advance directive and no husband; therefore, the de facto surrogate really was the family. Fortunately there was consensus among family participants. All seemed to participate in equal measure with due consideration for all.
Her wish as articulated by the family was to live and die at home in the U.S. Virgin Islands. In order to honor this wish, a protracted four- to five-hour air ambulance flight was required; yet this was viewed by all the medical personnel as medically imprudent and quite risky, fearing death in transit. Mrs. M actually stabilized and improved to the extent that the family elected to transport her (at their expense and to honor their mother) from our hospital to her home with intent to admit to hospice there. She was airlifted to her home in the U.S. Virgin Islands where she died peacefully amongst her family and pets, consistent with the family's wishes.
Angst among our team was considerable; chief among the concerns was the element of autonomy and truth telling. We relied on the prior documentation by the admitting physicians for the limitation of life-prolonging treatments (no intubation and do-not-resuscitate status); we did not confirm directly with the patient. We assessed her understanding of the diagnosis and prognosis via the family; indeed the entire plan of care evolved without her direct participation as requested by the family and due to her medical condition.
Did we collude with the family by not insisting on speaking directly with the patient? No; collusion manifests in protean forms, is variable in degree and not necessarily absolute. Its manifestations vary depending on participants, cultural context, philosophy of providers, and family dynamics. Individualistic societies focus on that which favors individuals, and collective societies support interdependent group interests; the notion of collusion naturally will be very different in each group. Is one correct and the other incorrect? 1
Ultimately, we (the authors) soothed our angst with evolving phronesis, a consequence of multiple factors, including especially the time with a family who possessed a simple equanimity of family affection (filial piety).
Confucius described the notion of filial piety often attributed to Asian cultures and less so to Latino cultures. 2 A similar principle of familism, which values one's family above oneself, is a cultural value that sets Hispanics apart from other cultural groups. Yet the notions of filial piety and familism may be more similar than dissimilar; indeed, they may apply equally to nonhispanic whites and nonhispanic blacks, as well as Hispanics. 3 Cultural competence and sensitivity suggests that a culture honor another culture's perspective which views some information (or ethical principle of truth telling) as hurtful (as this family did). Moral relativism seems to be an irrelevant notion in this context. This family ultimately honored their matriarch by taking her home to live and die where she wanted to be. They bore this at great personal financial burden. All families should be so pious.
We are healers; we are parents; we are children; we all do our best to elucidate choice and honor our loved ones. Our relationships and profession offer piety and presence to our service that is precious; we are blessed to witness this.