A vexing and difficult task in medical care of adults lacking capacity is how to assess what is in their best interests. Normally, a frank conversation with the patient and family may help settle a care plan and goals of treatment, but for some patients lacking capacity that conversation is not possible (or at least not fruitful). A new article addressing this issue is forthcoming in the Journal of Medical Ethics (and currently available in Online First format): “Clarifying the best interest standard: the elaborative and enumerative strategies in public policy-making,” by Chong-Ming Lim, Michael Dunn and CENTRES’s own Jacqueline Chin. Lim et al. argue that the state defining what ‘best interests’ means for adults lacking capacity is objectionable and instead governments should opt for a pluralistic approach to legal demarcations of best interests. In this post, I will summarize the article’s main arguments, then offer some critical comments of my own.
Lim et al.’s argument
The paper identifies two approaches to state determination of ‘best interests’ for adults lacking capacity (important when regulating what care physicians may or may not provide to such patients): elaborative and enumerative. Elaborative approaches attempt to explicate, in detail, what exactly ‘best interests’ amount to. For instance, Norman Cantor proposes in Making Medical Decisions for the Profoundly Mentally Disabled that we should use a “dignity” understanding of best interests; he further analyses care for permanently unconscious individuals as undignified, not in the patient’s best interests and so should be withdrawn.
Enumerative approaches, by contrast, do not attempt to analyze or define ‘best interests’. Rather, they accept a wide array of factors and details, unique to each case, that impact what counts as ‘best interests’ of a particular patient. There is no unifying definition of ‘best interests’; the concept’s extension will vary on a case-by-case basis. State involvement is limited to demarcating decision procedures to be carried out by relevant parties in order to assess best interests, including delineating factors that may be relevant to the determination.
Lim et al.’s central objection to the elaborative approach is that it imposes a particular set of “comprehensive values” on individuals. In states (such as Singapore) where there is great pluralism and disagreement among the population on what is ‘good’ for adults lacking capacity, the government picking a particular definition inevitably means overriding certain (perhaps minority) dissenters. These individuals and/or their families would be forced to abide by a set of norms they reject, which is disrespectful.
The enumerative approach avoids this objection, insofar as there is no ex ante comprehensive ‘best interests’ standard imposed on the population. It is flexible and sensitive enough to ensure that, in any individual case, a standard is adopted that is amenable to the patient’s own values (or at least the values they would endorse). Enumeration has its own downsides, including lack of specificity and consistency, but Lim et al. hold that those are minor in the present context and, in any case, not as serious as the imposition of values under the elaboration approach.
That is a very brief gloss on Lim et al.’s argument, but of course the article itself is much richer engagement with the topic. I encourage you to read the whole thing, especially if you work with adults lacking capacity – it’s an enriching article.
For my own part, I find the conclusion quite appealing – the state is in a poor epistemic position to evaluate subjective interests of patients, and procedural approaches to decision-making have many virtues.
However, I’ll raise two concerns with Lim et al.’s argument for those conclusions.
States constantly impose values
The authors hold that the pluralism of society and its values makes imposing values objectionable. However, governments act to override substantive doctrines all the time. Most matters of political controversy boil down to differing comprehensive doctrines. The paper seems to suggest state interference in the face of such disagreement is impermissible imposition of values. The Rawlsian response to such objections (pluralism+liberalism means we cannot legislate) is to find overlapping consensus – but that’s an option the authors explicitly eschew.
In correspondence, one of the authors relates that the present case involves the personal sphere, where state imposition of values is wrong (up to a point); in the public sphere, imposition of values is much more permissible. Familial relations are paradigmatic of the personal sphere, whereas economic transactions are paradigmatically public. The intimacy of the physician-patient relationship is meant to tilt things more towards the familial; society should respect the relationship may be constituted on substantive grounds that it rejects.
However, it is doubtful that medical care is primarily personal. Medical care often involves economic transactions; physician and patient are often part of very different segments of society, with very different substantive values. Personal spheres make the most sense when there is a coherent “unit” with shared values, but it would be odd to conceptualize physicians and patients as a unified group whose joint values need protecting. In addition, the state regulates medical care in many ways already – including medical licensing, medicinal products and insurance coverage.
Maybe there are features of this particular question – determining best interests of the patient – where the generally ‘public’ interactions between physician and patient become private. This is something that will need further elaboration, perhaps by the authors in their future work.
Subjectivism is a substantive doctrine
Lim et al.’s approach is not truly pluralistic or enumerative. Rather, it seems like a constrained, subjective form of proceduralism. In particular, it must exclude the certain considerations from determination of best interests: substantive doctrines other than the values of the patient (and perhaps their family).
For instance – suppose a liberal atheist with severe dementia lives in a community and a family that firmly finds extraordinary treatment for individuals with severe dementia undignified; the atheist personally avowed this commitment at various points earlier in life. Some conservative Christian communities will have substantive, doctrinal grounds to believe that sustaining life with dementia is inherently dignified and worthwhile. Should the conservative Christian view be taken into consideration when assessing withholding of extraordinary measures? On a truly pluralistic account, yes – their reasons and arguments are germane (if they’re substantively right, treatment should not be withheld) and need to be considered, evaluated and weighed against the patient’s. But on Lim et al.’s account, no – to do so would be to impose a substantive view of a group or community to which one doesn’t belong or assent to on the individual. So the account strives to use procedural means to assess a particular subset of facts relevant to best interests: facts about that individual’s own preferences/values. This in turn implies a subjective understanding of what ‘best interests’ amounts to.
That raises a higher-order issue, one that is the main reason I find Rawlsian approaches to political legitimacy objectionable and perhaps internally incoherent: you end up committing to a comprehensive view (subjectivism about interests) that grounds how we should regulate certain activities, a view that some (e.g., Norman Cantor) would vigorously dissent from on substantive grounds. Codified into law, this would mean an imposition of substantive views, which was the problem with the elaboration account in the first place. The authors may be fine with that higher-order imposition (as Rawlsians tend to be), but I wonder why we can privilege such imposition when, in many ways, it is more fundamental to the basic structure of society (Rawls’s focus) than individual laws such as those governing withholding of treatment.
One of the authors, in correspondence, points to a passage on page 6 that seems to militate against my above subjectivist reading. The passage argues that relativism carries a risk of abuse, and the case of overriding parental values of children of Jehovah’s Witnesses is given as an instance when one cannot wholly rely on familial interpretations of best interests.
I would first note that the paper explicitly set aside the case of children from consideration. Best interests assessment is even more complicated in that case, and subjectivist models (as, I still believe, was presented in the paper) might not be applicable to children.
At the same time, the authors in the same passage do agree that, for adult Jehovah’s Witnesses, we should indeed defer to their values. And the main cases of abuse that we should guard against still seem cast in a subjectivist light: we do not want the family imposing a value (e.g., opposition to blood transfusion) on patients who may not themselves be committed to that value. The key, from that passage, is to take “alien” values seriously, and determine whether the values are held “in earnest.” This seems to be quite subjectivist, insofar as the primary task of the care team is to assess the patient’s core values and commitments, which will inform how they should understand “best interests” for that particular patient.