I wrote a post yesterday before I led a workshop for ethics committees or hospital personnel simply interested in the ethics of setting limits in health care . Today I want to write about what I learned from the 25 wonderfully engaged folks I met with and from conversations subsequent to the workshop. Here are my initial observations:
- One of the three core components of the framework for setting limits fairly that Norman Daniels and I developed is publicity or transparency. On the basis of our observations in the US, Canada, and the National Health Service in England, we argued that those responsible for setting limits (health plans, government agencies) should share the rationale for policies and decisions with the public. In liberal democracies in the west, this stipulation is widely accepted. My impression is that Singapore has more of a tradition of accepting governance by experts and judging their policies by results, without expecting the level of transparency, access and participation that is especially valued in the US. The group I spoke with suggested that the value we in the US place on transparency is not as strongly shared by the population and government in Singapore. To be useful, transparency requires a public experienced in understanding, evaluating, and interacting with policy makers, and policy makers experienced in a reciprocal role. My tentative conclusion thus far is that for transparency to contribute to improved policy making in Singapore, a period of learning or skill development will be required. I did not recommend a sudden shift in practice, but did suggest development of a strategy for how to engage the public in constructive interactions over time.
- Physicians in the group told me that it's common for families to press for continued "treatment" even when the clinical staff has concluded that comfort care is the right approach. I asked them whether families doubted their clinical assessment or believed that a miracle might occur. Those weren't the reasons. They explained that there is a strong expectation of filial piety in Singaporean culture, and not pressing for continued active "treatment" felt disrespectful and even shameful to the family. They hoped that as advance directive conversations became better developed they will be able to talk with children about "what would your father/mother have wanted in this situation?" Their sense was that as is true in the US, most elderly people would want to shift to comfort care and not be "flogged" by fruitless interventions. Moving to comfort care could then be seen as the way to show true filial piety!
- As part of our discussion of the family role in setting limits, a participant told us that because of family guilt if they feel they aren't doing "everything," talking with families about options that from a realistic perspective offer no benefit even though we can never say with absolute certainty that they won't be effective for the first time now can cause real harm to families. She described a situation in which a family sold its home to pay for an intervention that in practical terms was "futile."
- Singapore health policy has been developed to minimize the risk of what they call the "buffet syndrome" - that full coverage creates "moral hazard" and will lead to excessive utilization. Their system of required savings to pay towards one's own (and one's family's) care is very cleverly engineered to confront Singaporeans with the cost implications of their treatment and, at the same time, to try to make sure that they have resources in their savings accounts to pay for their choices. But with an aging population, more chronic illness, and new technologies, middle class families are facing costs they can't reasonably meet. The group cited another instance where in order to finance valuable treatment a family had to sell its home and impoverish itself. This was consistent with what a taxi driver told me - "In Singapore you can die, but you can't be sick."