Friday, December 28, 2012

Nuffield on "Public Ethics"

I always enjoy and benefit from reading the reports of the Nuffield Council on Bioethics. Its latest on Emerging Biotechnologies is no exception. I hope to have more to say about the substance of this report in future posts, but for now I want to single out one of its features for questioning. The report makes a great point of the importance of thinking about emerging biotechnologies from what it calls a "public ethics" perspective. The public, the Council urges, has various important interests at stake in the regulation of emerging biotechnologies: the impact they'll have "on a public scale;" the public resources invested in them; the "significance attached to living things;" and their potential to change our lives, and to benefit some at the expense of others. We need to hold these public interests in mind when doing our ethical analyses. We can't leave private or scientific interests in charge. The Council articulates three "values" of public ethics (equity, solidarity and sustainability) and five "procedural virtues" of public ethics (Openness and inclusion,Accountability, Public reasoning, Candour, Enablement, and Caution).

When I first saw this, I thought immediately of Rawls's "Idea of Public Reason." But it turns out there's nothing so subtle or interesting here. Where Rawls was thinking about the kinds of reasons that could properly be mobilized in a public debate (general principles of equity, for example, rather than private religious convictions), the Council's talk of "public ethics" seems to be asserting the claims of public and collective interests against those of private interests. Their insistence on public ethics is not an insistence on a way to conduct ethical debate in public, but rather an insistence that ethical debate should be dominated by public rather than private interests. Normally, regulation is bargained for by those with focused interests in that regulation's structure. Those who would benefit or be burdened by a proposed regulation organize themselves politically in order to shape it. Folks tend not to mobilize and organize to shape regulations that will benefit them or burden them only in a diffuse, small way. (That's why the US Clean Air Act poses a classic mystery for Poli Sci. Its burdens--costs of compliance--were concentrated on a highly-motivated few, while its benefits--slightly cleaner air--were diffuse and uncertain. Yet it passed.) The Council here seems to be arguing, "Don't let the focused interests of industry run away with nanotech or synthetic biology; regulatory framing should instead be dominated by consideration of the admittedly diffuse and disorganized interests of the general public--because, diffuse as they may be, they weigh more in the end than the focused and organized interests of the small numbers of people concerned with developing new biotech."

On this reading, the Nuffield Council's promotion of "public ethics" is a quiet sort of attack on the normative Interest Group Theory of Politics.

Friday Frivolity: Hair of the Lime that Bit You Edition

Wednesday, December 12, 2012

The Liverpool Care Pathway Kerfuffle

The British press has been hurling around various accusations about the use and misuse of the Liverpool Care Pathway for the Dying Patient ("LCP") for a couple of years now. The LCP is a UK care pathway covering palliative care and nursing options for patients at the end of life. It includes prompts for management of a wide range of end-of-life symptoms; crucially for the debate, it provides for cessation of artificial nutrition and hydration for some patients. The latest round of adverse coverage is largely based on findings of an audit undertaken by the LCP's developer; the audit found that in 44% percent of cases in which a decision was made to place a patient on the LCP, there was no record of a discussion with the patient about that decision; and that one-third of patients' families were never given an informational leaflet describing the LCP. Additionally, there are accusations that hospitals are putting people on the LCP who shouldn't be, perhaps in order to secure financial rewards that flow to facilities that reach targets for LCP use. These allegations, combined with earlier alarmist claims that the LCP was being used to "euthanize" scores of thousands of patients who weren't dying, resulted last month in the government's announcing the launch of an independent investigation into the use of the LCP.

Since that announcement, though, an additional accusation has been leveled in the Daily Mail (which has been pressing the LCP issue all along). Citing this anonymous article from BMJ about withdrawing feeding from newborns, the Daily Mail claimed that babies were being put on the LCP. The trouble is, the BMJ article was written by a physician not based in the UK, and not using the LCP. Of course, that didn't prevent the Daily Mail piece from being picked up here in the states by, for example, Wesley Smith, whose sensitive treatment of the subject, entitled "Dehydrating Disabled Babies in UK Hospitals" ran in the National Review Online. "This is what happens when a country allows bureaucrats to control healthcare," he intoned--and then drew the "parallel" to Obamacare. Similar discussion could be found on numerous right-wing websites. Will any of those sites revise their comments now that their foundation in the Daily Mail piece has been exposed as fact-free? I'm not holding my breath.

At this point, I hope the independent investigation is thorough and that it makes serious recommendations for addressing all of these concerns. A tough review with real suggestions for training and reform might well save the LCP, and the LCP is well worth saving. The protocol has won plaudits in palliative care journals, was well reviewed in the Royal College of Physicians original National Care of the Dying audit, has garnered the support of palliative care nurses, and undoubtedly eases the deaths of many tens of thousands annually. But there seems also to be little doubt that it has sometimes been carelessly implemented, or implemented with insufficient discussion and explanation.

One suggestion--indeed, a plea--for anyone who wants to comment on the issue, though: Read the actual pathway. That will have the salutary effect of enabling you to distinguish problems that result from following it from those that result from not following it.