At What Point Does Respecting Autonomy Become Self-Defeating?

From O’Neill’s conception of Reproductive Autonomy to Autonomy Proper

One of my more favorite authors on issues concerning autonomy is Onara O’Neill. As an academic she does a very good job at discussing the contextual developments of certain forms of autonomy. The more notable discussions can be found in chapter three of Autonomy and Trust in Bioethics; “Autonomy and Twentieth-Century Reproduction”. It begins with an analysis of how some conceptualizations of Reproductive Autonomy developed (became manifest) through a mainly patriarchal society. As O’Neill discusses, it was an appeal to privacy laws that permitted citizens to practice whatever form of contraception they desired because it occurred in the private sphere. And through the developments of Roe v. Wade it was deemed a practice (using contraceptives) that did not result in direct harm of another individual. The positive results of this development was the ability for couples and women to make informed decisions concerning their reproductive choices. It should be noted, as O’Neill makes explicit, that as contraceptives did become available it was still up to the discretion of physicians and so it was not always the case that getting your hands on such forms of contraceptives was as liberal as one would have preferred.

What must be maintained when discussing patient autonomy is the importance of including context in ones analysis. The historical and philosophical take on reproductive autonomy that O’Neill provides is absolutely crucial to constructing models that might address imbalances of power between the relevant players. The worry is that if we do not fully represent the interests of the patient because there is too much power on the side of one of the players, then we run the risk of an oppressive situation. This “oppression” needs to be addressed because it sheds a very vibrant light on one of the worst situations a patient can experience. This is what we should aim to prevent. It is also the basis for many problems in clinical scenarios because it is not a balance that is easily struck.

What can be said of the benefits of respecting patient autonomy?

I do not want to get into the debates surrounding the best model or explication of “respecting patient autonomy” here. What I hope to appeal to is an intuitive description of what most would agree is the benefit of respecting patient autonomy. It will look something like this:

1. When engaging in a reflection of patient autonomy it is important to note the setting and the players: i. Hospital, Physicians Office, Counseling clinics, Mental Health Clinics, Homes (in emergency scenarios) etc.. ii. The patient and the medical health professional.
2. Each competent patient has the capacity to make decisions given the willingness of the health care professional to engage in informed discussions with the patient. (Note: There are cases where a physician may deem someone as incompetent and I do not wish to address those scenarios here. I understand that they are important and ought to be discussed but do not feel an article of this length can do a sufficient job.)
3. There are presuppositions that both the patient and the physician hold concerning what the aim of medical care is. For the patient it would represent a state of affairs where the quality of life of the patient is somewhat improved. For the physician this would represent what ‘treatments‘ are the most relevant considering the circumstance by which the patient finds herself/himself.
4. Trust is another central component that some might say is either necessary or sufficient in order for a respect for autonomy to take place. I will not say whether this is valid or not but will simply state that “trust” is very important in order to facilitate some goal that both the patient and physician must be a part of.

All of these taken together can be constructed by the following logical model:

(D & P)->; (Q & T)

i. Given a scenario where a patient is in need of the services of a physician, it follows that the there must be some agreement about the patients quality of life against the available treatment of the physician.

This is a rough conceptualization of what the aim of respecting autonomy ought to be about. So let us consider what reflections we can arrive at concerning its application.

Does “Q” take precedence over “T”?

The first question that should be asked is whether the patients conception of an ‘improvement of their quality of life’ takes precedence over the physicians ‘available treatments’?

If we say that there are circumstances where “Q” DOES take precedence over “T”, the likely consequence is at least one of two possibilities. First we have a scenario where the patient simply refuses the proposed treatments offered by the physician. For example, if a physician is encouraging a patient to transition to Palliative Care because the physician deems “Curative” measures useless, the patient ought to have the freedom to refuse. Even if this means that their only reason for refusing such a transition is because they value life over death. This first scenario is one where the patient chooses what they feel is the best treatment out of a list of available treatments. The second scenario is a situation where the patient simply does not abide by any of the medical counsel of their physician. This can be exemplified by a scenario where a patient may choose homeopathic remedies over medical ones. Say, for example, in situations where a patient is prescribed Clonazepam and refuses on the grounds that they feel that St. Johns Wart can be just as good at handling anxiety.

To be continued (first draft)..
*please note that this is a working draft, part of which, that has already been published
Please feel free to share your opinions by emailing feedback@ethicalonion.com

Palliative Care Ethics: Benevolent Paternalism

Source from Palliative Care Ethics: A Companion for All Specialities (PCE).

I noticed a very interesting relationship, discussed in chapter two of PCE, concerning patient-carer models and consent models. There are five “carer models” and three of them are tied to certain models of consent. The five carer models are as follows:

1. Benevolent Paternalism
2. The Customer-Sales Person Model
3. The Contractual Model
4. The Partnership Model
5. Trustee Model

The three models of consent are as follows:

1. Consent as accepting.
2. consent as authorizing
3. consent as shared decision making

The interesting result is that the authors seem to be suggesting that a partnership or trustee model is preferable to a paternalistic model. This supposedly sounds right at face value but when the details of each theory is worked out this may not be as exclusive a choice as one might hope for. Why is this interesting and perhaps problematic? Well because Benevolent Paternalism starts to emerge as an important and possibly necessary component of palliative care; specifically in cases where the patient’s autonomy is severely diminished. I will examine this important consequent in detail to see whether or not the fourth or fifth model of care can remain unfettered by benevolent paternalism.

Summary of Patient-Carer Models

All of the patient-carer models acknowledge the autonomy of each party involved: the physician and the patient/proxy/relative. As we move from the first model to the last model you will find that the concern, and thus focus, becomes more about a diminishing autonomy. Usually most of the problems addressed with each model concerns how the patient, within the context of palliative care, is likely to experience destabilization due to diminishing health.

With the first model we have a situation, often discussed in undergraduate bioethics courses, whereby the autonomy of the patient is not respected; Benevolent Paternalism. This is not intended as a malicious kind of approach but can often result as one because of the uneven distribution of power between the carer and patient. The book describes this a “fatherly” approach to care. The carer bases her/his treatment on knowledge that arises from the carer’s biological good with little or no regard to, what the book describes as, the patients total good. What is critical about this model is that the patient’s good is not of interest. It is either assumed to be consistent with the carer’s biological good or not taken into consideration at all.

With the second model we have what is identified as a customer-salesperson carer model. This is presented as the type of healthcare practiced in the U.S., due to the privatized quality of such models of health care (More could be said about whether this is a fair conceptualization of the carer-model in the U.S.). Nevertheless this approach focuses more on the patients right to choose whatever treatment they feel is appropriate. The role of the carer is to inform the patient of all the viable options for a particular treatment. The notion of responsibility, in terms of the chosen treatment, is completely in the hands of the patient under this model. Also the autonomy of the carer is undermined on the basis of “buyers force”. In other words since the buyer gets to choose what is best, on the basis of the fact that they are paying, the right to offer informed treatment by the physician is undermined; when the two clash.

The third model is more about how to respect the basic rights of both the carer and the patient. The aim of this model is to protect undesirable action rather than working towards a particular form of treatment. The model is described as the contractual model because of the respect afforded to moral and legal rules. The former arises out of a social contract, verbal or not. The latter arises out of written legal rules (I.e. the criminalization of active euthanasia within Canada). In sum we have a situation where the patient has the right to refuse a form of treatment, if they are competent and if it conflicts with the patients total good. Proportionally the physician has the right to refuse implementing a specific type of treatment, such as the instance where that particular proposed type of treatment conflicts with the carer’s conception of the biological good.

The fourth model emphasizes working towards a common goal between both the physician and the patient. This obviously will work when the interests of the patient -the total good of the patient- is communicated to the carer via a series of meetings in order to discover a treatment that will respect the total good of the patient. This model, labelled as the Partnership Model, places more emphasis on the patients total good. With this, the author of the book suggests that such a model would result in the carer abdicating responsibility in order to respect the autonomy of the patient, thus disrespecting the autonomy of the carer.

The fifth and final model, known as the Trustee Model, looks at protecting the total good of the patient, as well as the autonomy of the physician, by working towards a treatment that can be pursued when the patient is not able to communicate what would be desirable for them. Thus, since it is very possible that the patient’s wishes are not discoverable, two principles are implemented in place of what would more probably constitute the patients total good: beneficence and compassion. This usually results in desiring a treatment that minimizes the suffering of the patient. Of course the biological good will hold a lot of weight in determining an appropriate means of treatment (I.e. in instances where a patient’s ailment has spread to the point of irreversibility, often sedatives are prescribed to manage pain. This is usually followed by the removal of any mechanism providing either hydration or nutrients.).

The Diminishing Autonomy

In actuality PCE is looking to offer a particular ethical model that is workable within the setting of palliative care. This means that some of the models can be irrelevant in most cases of actual practice. The first model is only redundantly problematic because a paternalistic model can only be problematic if the patient’s concerns, interests and values are known. If it is the case that this is not really known, then how the carer acts -all other things being equal-, cannot really be said to violate the patient’s total good. The same thing can be said about the remaining four models. For model two, how can we inform the patient of all of the treatments, if they are not competent to receive such information. For model three, we cannot really discover what the patient’s undesirable treatments may be. With model four, there can be no partnership if one of the parties are not available to make explicit what such a partnership would look like. This is where the desirability of model four comes in. If the patient’s total good cannot be known due to the status of their diminishing autonomy, then something is needed to represent what that form of good might be comprised of. That is why principles of beneficence and compassion is utilized as a form of guidance for the physician/carer.

Thus what is problematic for proposing a Palliative care ethics is being unable to determine what the patient’s good might look like. This is a bit of a simplification because determining a patient’s autonomy is important if only because, in determining a treatment, we want to make sure we are not doing something that may harm the patient; physically, emotionally, spiritually, religiously etc…. The normative dimension of such an approach concerns the rights that the patient is entitled to.

The question that seemed to emerge is if it is the case that the patient is deemed incompetent (say because they are unconscious), then is the dependency on beneficence or compassion not something that will come from either the carer’s own conception of their total good? And if so, how is this different from Benevolent Paternalism?

Ultimately the carer’s autonomy is ultimately more, if not exclusively and completely, expressive because the patient cannot express theirs. Further the physician is there to provide some kind of medical good, so how can the physician be expected to provide any kind of total good based upon the wishes of the patient. We are assuming what such a good might look like, but we cannot be sure this is indeed what the patient is hoping for. In a recent case, where a man is suffering from locked in syndrome, the very ruling of the type of treatment is based upon this fifth model. However, many people are outraged because it is a clear instance of the physicians’ conception of some total good being inconsistent with the patient’s conception of their total good. The global setting is divided as to whether this is a appropriate form of treatment or care. It is true that this case is arguably unique because the patient is not unconscious. However, it is a clear instance where the communicated good has not been respected out of the physicians conception of compassion, care and beneficence. The important criterion of consideration is whether or not benevolent paternalism nevertheless emerges, in cases where the patient’s wishes are either not respected because they are deemed incompetent or because they are simply unable to express them.

A note about the use of “carer” and “physician” interchangeably: it is not always clear that, in Palliative Care, the medical decision is one that arises out of a single agent. Often the decision arises out of a consultation amongst physician’s, nurses, ethical committees , families, religious figures etc. I will work to be more clear about this exchange of terminology for the final draft.

Total Good and Biological Good

The book makes consistent use of the conception of a total good and the conception of a biological/medical good. These two terms need to be deflated a bit because it is not clear that the two are mutually exclusive in certain circumstances, especially those under the domain of palliative care. Also determining the total good of the patient cannot rely, necessarily, on some medical/biological good determined by the patient in the same way that it does for the physician. This is part of the reason why we have problems emerging out of a conflict between these two notions of the good. I do not want to mislead the reader into thinking that these two types of good will always conflict. Rather in the cases where they do conflict, it seems unreasonable to assume that the patient’s total good depends exclusively on a medical good. If it did, then we wouldn’t really concern ourselves with the patient’s values, beliefs, interests, religious convictions or familial obligations-as examples.

It is also important to be clear about the fact that the physician has some conception of a total good. This may not be the same view held by that of the patient, but we mustn’t forget that the physician is not simply some dehumanized tool.

They will have values, interests and beliefs that are not exclusively medical. This does not absolve the physician of the responsibility to determine the values, wishes and beliefs of the patient. However it does mean they are capable of understanding that the patient does indeed have some conception of a total good. The problem , however, is whether or not the physician is really required or “ought” to be required to discover this notion of a total good.

It is fair to say that, insofar as the physician is required to treat the patient, the total good of the patient will be determined as a secondary point of consideration. In what sense “secondary”? In the sense that the pressing issue is finding a way to improve the quality of life of the patient via some medical means. If there is some “other” desire that arises out of the patient’s total good, then that should be pursued outside the medical context. This should leave the reader with a pressing issue; namely that “time” is neither on the physicians side nor the patients side. There is no real way to address the medical concern exclusively and then allow the patient some opportunity to pursue their total good independently. Also, is it the case that because the total good seems to also include the wish to die, does that then mean that it becomes part of the medical good. This kind of conflation of responsibility really ought not to fall on the shoulders of the physician. There are a growing number of physician’s that are beginning to respond to this growing desire/demand, but are they really fulfilling a medical good? Or are they fulfilling some conception of a total good exclusive from medical? Further, is it ethically permissible for the physician to respond to that kind of desire? This ongoing concern seems less and less likely to have a resolve as the setting broadens along the global sphere.

In considering this potential view, the view that it is not the physician’s ethical responsibility to respond to claims concerning a desire to die, within the domain of palliative care, I will turn to the three conceptions of consent discussed in PCE.

Consent and The Desire to Die

In PCE three views of consent are examined that are intended to respond to the patient-carer models proposed. Each view examines the kinds of scenarios that arise within the palliative care setting. That is, they arise in the instance where the patient has some diminished view of autonomy (more needs to be said concerning the diminished view of autonomy).

The first view of consent is termed consent as accepting. This is when the patient is weak (either in a physical sense or in an autonomous sense) and thus does not really have much say in the medical treatment offered. The book provides a specific example of what this would look like in terms of a directive to a patient:

the physician says ” I will do X and Y…” or “I have done X and Y”, “…is that okay?”.

Because the patient is weak, in the sense alluded to, they are forced to concede. Remember that the directive is based on a type of treatment that, in turn, is based on some biological/medical good.

The second view of consent follows a directive that includes some other party such as a proxy or relative. This view is termed consent as authorizing. The formalization of this view is “A authorizes B to do X, Y on her/his behalf”. In this instance of consent the authorization comes directly from A. Thus the responsibility of the decision rests entirely on the shoulder of A. The book alludes to this as an instance where the physician’s autonomy is undermined because the directive is based on the authority of those who are authorized. However, in many actual cases this manifests itself as a right to refuse certain types of treatment (I.e. D.N.R request) rather than a complete infringement of the physician’s responsibility.

The third and final view of consent is self explanatory and termed consent as shared decision making. This type of consent is said to be comprised of two elements:

1. Patient’s preferences and values are discussed with the physician, in light of the physician’s treatment proposal.
2. The discussion results in the implementation of a socially or legally sanctioned procedure.

There are three further considerations that result from the necessary and sufficient components of 1 and 2. The first is that permission is given by both the patient and the physician. The second is that permission is a normative term in that it concerns “rights”. The third is that the norms must be socially and legally sanctioned or legitimized by public policy.

These considerations of the third type of consent seem to derive from the type of carer-patient model that concerns a partnership. In cases where the patient is deemed unable to express their desires, due to a worsening status of their condition, the recommendation that the trustee model is made.

Trustee Model and Inevitable Paternalism
T.B.C

*please note that this is a working draft, part of which, that has already been published

version two, revisions will follow based upon reflection and feedback