Sharing Decision Making (Without Sharing a Religion) Despite many clinicians’ hesitation to go there, patients’ religious preferences can be genuinely engaged in the application of clinical genetics. By Joseph B. Fanning
In a recent issue of Pediatrics, a girl, diagnosed prenatally with trisomy 18 and complex cardiac defects, raised ethical concerns for providers and parents about how to best care for her. The parents asked that all treatment offerings exclude considerations of the child’s genetic profile:
needed for shared inferences.2 But true incommensurability is rare. My purpose is to show how shared decision making can engage stakeholders
As parents, our challenge was to uphold our firm conviction that decisions regarding life and death are the sole province of our Maker while at the same time respecting the feelings and consciences of those who would be caring for our daughter (and loving those care providers as well). We believe that the knowledge and skills of the medical staff are a gift of God, and should be used in the furtherance of life, not in its destruction.1
The obstetric, genetics, fetal medicine and cardiac teams had different professional opinions about the appropriate medical options. Undoubtedly, some of the health care providers did not share the religious beliefs of the parents. The commitments of these stakeholders generate real differences that can be attributed to the practices of clinical genetics and religion. How are differences that emerge from these activities resolved? Some would argue that scientific and religious worldviews are incommensurable, lacking the common resources 24 GeneWatch
with religious and genetic commitments in a process of navigation and negotiation that helps decide what to do. As a healthcare ethics consultant, I seek to support shared decision making in a variety of clinical settings. Arriving at shared decisions in health care is difficult work requiring skill and effort to manage different perspectives. This process is especially challenging when clinicians’ technical expertise is hard to grasp
and when patients or their family have complex psychosocial situations that clinicians do not understand or endorse. Clinical situations always bring particular configurations of concern that must be addressed; however, cultural attitudes and habits related to genetic and religious practices can create distinctive barriers to a deliberative process. Naming and understanding these social patterns can help overcome the collective anxiety they often produce. Richard Rorty once called religion a “conversation stopper.”3 When people realize a divergence in religious practice, whether at a dinner party or in an examination room, they often will start talking about something else. The norm is to halt religious lines of conversation at the first sight of difference. In the U.S. context, curiosity about religious/spiritual differences is stifled for a multitude of reasons, many of which can be traced back to political guarantees of religious liberty underwritten by religion’s restricted role in the public square. When patients/ families raise religious concerns during ethics consultations, I observe clinicians reluctant to ask questions about how the patient/family’s religious practices apply to this medical situation. When I ask providers August-October 2013