AHMS 270E: Medical Ethics Week 3-4
Current Interests Standard
Ethicists Robertson and Dresser propose a version of the best interests standard known as the "current interests standard." It requires observers to evaluate, from the incompetent patient's perspective, indications of the patient's subjective state, and ultimately, to judge whether this state of existence is a sufficient good to justify further treatment of the patient. In short, will the treatment advance the current and future welfare of the patient? According to Robertson and Dresser, the standard has the following advantages. 1. It is respectful of individual; 2. it will permit non-treatment to occur when justified, such as PVS patients; 3. it acknowledges the role of costs, family, stress, and similar concerns, thus preventing them from influencing nontreatment decisions in an uncontrolled or undisciplined way; 4. it sharpens the conflict between a patient-centered and other-directed approach and explores the normative claims of such issues as family interests openly; 5. it permits the family to be the initial or primary decisionmaker; and 6. finally, quality of life judgments are inevitable, so it is better to make them openly, rather than disguise them.
Alternative formulations
Previous court cases have shown creativity in combining the above standards. For example, Conroy tried to combine standards for circumstances when the courts have the authority to make decisions for wards of the court. For example the "Limited-objective" standard requires 1. some trustworthy evidence of what the patient would have wanted; as well as 2. clear evidence that the burdens of the patient's continued life with treatment outweigh the benefits of that life for him. The "pure-objective" test (Conroy's version of best-interests standard) requires that 1. net burdens outweigh benefits; and 2. pain is such that administering further treatment would be inhumane. What is not to be considered are the benefits and burdens to others and assessments based on the "social worth" of the individual (e.g., the contributions of the individual to society). When in doubt (because of lack of evidence), it is best to err on the side of life.
Competent patients:
With competent patients, the ethical basis for your treatment is informed consent of the patient.
Previously competent patients.
With patients who were once competent are now not competent, advance directives may help honor patient autonomy. An advance directive is like an extension of autonomy into a period when autonomy would be lacking.
Never competent patients
(e.g., newborn, individuals who have been mentally handicapped since birth/youth). How can one decide for people who have never been competent? There is obviously no way to know what they would want if they were competent as we have no history of wishes or values about what they would want in the kind of situation they are facing. We will consider standards of proxy decision making next week.
The following are problems with substituted judgment:
1. It is problematic when applied to never-competent patients. It seems conceptually and morally questionable to treat never-competent patients as if they were competent; in such cases, respecting a persons autonomy rests on a fiction. 2. Regarding making judgments based on prior values, Arras points out that it is one thing to have a negative attitude toward aggressive life-support for others, but it is another to refuse it in your own case. 3. Dresser and Robertson make several other arguments against substituted judgment and best interests standards (what they call the "orthodox approach"). a. That incompetent persons are essentially treated as autonomous decision-makers. But choice is irrelevant if one lacks the capacity to choose. It is better, they believe, to ask about current interests. b. that expressed or inferred prior choices are an inaccurate indicator of incompetent persons' current interests. c. that interests change over time; the interests of a competent person contemplating a hypothetical future and interests of the incompetent person once that future occurs, may diverge; this is a further disadvantage of advance directives; d. The orthodox approach opens the door to non-treatment of nursing-home residents and other severely debilitated persons based on what competent person believe they would want in those situations, or on what meets the needs of their families and others, rather than on what serves the needs of the incompetent patients themselves. e. When patient is no longer competent, the patient lacks interest in privacy, dignity, and other values that presuppose some conscious appreciation of those concerns; thus priority given to family interests. f. Also a risk in over-treatment, when courts apply standard too zealously when previous wishes aren't known.
Who Decides?
As a health care professional, one of the first requirements for a good ethical outcome is for the physician, health care team, patient, and family to be on the same page regarding the identity of the authorized decision maker. Again, the primary decision maker is the competent patient. But, the situation may not always be straightforward, and it gets especially complicated with the patient's autonomy (or competence) is compromised or nonexistent. Confusion in this area can great complicate matters, as persons who lack decisionmaking authority begin to voice their views about what should happen with their loved one.
Living Wills
Documents in which the previously competent patient puts into writing what his or her wishes are for medical treatment should there be a loss of competency.
Role of others
Decision-making on behalf of incompetent patient is complicated even further when there is no advance directive. States vary on what procedures may be followed. Families are the ethically preferred decision-makers because of their familiarity with the patient's interests, values, and life. In fact, there is a recent surge of literature related to the role of the family in decision-making, even for competent patients, and how much that should be allowed. Physicians and other members of the health care team, of course, should also be party to decisions because of their technical expertise regarding the patient's condition and experience with the patient. They are also key to establishing patient competence and thus function as gatekeepers of a sort to establishing the locus of decision-making. Does decision-making authority rest with the patient, or the proxy, or somebody else? Is a consultation with a psychiatrist necessary? If necessary, the health care institution may seek a court-appointed decision-maker for the patient.
Informed Consent
Informed consent has become a cornerstone of medical ethics and the provider-patient relationship during the last century, receiving its first real worldwide urgent attention in the wake of the revelation of the experiments by Nazi doctors on patients without their consent. The notion is grounded in the moral concept of respect for persons—which can be articulated as the principle of autonomy, or treating persons as ends in themselves and not merely as means, or a right to self-determination. The concept is now well established in medical ethics as well as in case law. To quote the formulation in the famous case, Shloendorff v. Society of NY Hospital: "Every adult human being of adult years and sound mind has the right to determine what shall be done with his own body." As ethicists Brock and Buchanan point out, two moral principles underlie this doctrine of informed consent. One is the principle of autonomy—a person's interest to decide for him- or herself about his or her own life. The other principle is promotion of the patient's well-being (beneficence). The idea is that patients are better judges of their own good than others (also, an argument against paternalism). To take this a bit further, notice that the consent has two components: informed and consent. To be informed means that the patient have adequate information to make a choice and have the capacity to understand it. That means information about diagnosis and prognosis. Information about treatment options and risks and benefits of those possible treatments. And, to consent freely, the patient must not be subject to any coercion or undue influence and be of sound mind—that his, have decisionmaking capacity, or sound mind. Again, we'll probe this notion of informed consent a bit more fully later in the course. Obviously, even if this principle or right is accepted, there remain questions about how to interpret how much information is sufficient, given the level of detail that could be communicated to a patient, and whether a person actually has capacity to consent and is free of coercive influences. In addition, there are moral dilemmas raised when this right or moral rule conflicts with other obligations the health care provider may have toward the patient, such as preventing harm to the patient or promoting well-being—recalling what we talked about in relation to paternalism.
Arras's procedural solution.
John Arras argues that for gray area cases, namely, with patients in conditions between a persistent vegetative state (PVS) and being minimally functional—decision-makers should not relying on clear and convincing evidence but a procedure. When a proposed course of action falls into the gray area of uncertainty, involved and well-intentioned family members should have discretion to decide as they see fit. The family's decision should not clearly violate the best interests of the patient. If, as in the Conroy case the benefit from continued living is eclipsed by severe and intractable pain—then we have either the "gray zone" or clear-cut non-treatment. Is the patient benefiting from continued existence? Capable of social interaction? Is the patient sufficiently intact self to care about future? If no to both of the latter, then the patient falls into gray area. So what are we to make of all these standards and their respective advantages and problems? In general, it is good to know when the standards apply—especially substituted judgment and best interests. Knowing the difficulties, though, can help keep one alert to the ethical pitfalls of applying them and help one use creative judgment within the health care team when participating in decisions about patient treatment—whatever your role is. As a patient advocate, it can be good to be aware of ways in which standards might be applied that are ethically problematic for the patient.
Competence
Let's move to the distinction between competence and incompetence. As the editors of your text note, the term "competence" is strictly speaking a legal term, referring to a judgment by a judge regarding a person's legal status to make medical decisions. In much of the literature and in our discussions, however, we will follow the text editors and use the term to refer to the capacity for autonomous decisionmaking. You may, however, in some literature, see the term "having capacity" or lacking capacity," substituted. So competence judgments by health care professionals distinguish those persons whose autonomous decisions must be respected from those whose decisions may need to be overridden (weak paternalism) if they have any decision-making capacity at all. A few points about the concept of competence: As Brock and Buchanan argue, competency is not a global attribute but a "decision-relative concept." What does this mean? Competency is relative to the particular decision that must be made, and that includes variation of the objective demands of a task, as well as variation in capacities needed to decide. Environmental factors and the behavior of others may affect level of competence—for example, by causing stresses that diminish capacities to reason. In addition, it is important to note that competence may vary over time—a person may have competence for a particular decision in the morning, but lack that competence in the evening. Such variance may be due to effects of medications or disease processes that affect a person's cognitive capacities. Thus, evaluation of competence in the medical setting is an iterative, or ongoing, process, rather than a single event; decision makers need to take advantage of periods of lucidity. Capacities needed to decide such matters as health care decisions include: a) capacity for communication (linguistic, conceptual, and cognitive) and understanding (appreciation of the nature and meaning of alternatives); and b) capacity for reasoning (drawing inferences about consequences, probabilistic thinking; giving due consideration to potential outcomes) and deliberation (making use of other capacities). An individual must have a set of values or conception of the good (not, though, a full life plan); An adequate standard of competence will focus not primarily on content but on the process of reasoning; A standard of competence is related to expected harms and benefits; just because a person is competent to receive treatment, doesn't mean s/he is competent to refuse it. The obligation to respect the wishes of the competent decision-maker relies on two values: Beneficence: Promotion of well-being: the ethical goal of every provider Autonomy Establishing standards of competence and incompetence are practically and theoretically difficult. No one standard seems adequate for all medical situations. Brock and Buchanan reflect the ethical consensus when they state that assessing competence should focus primarily on the process of reasoning that leads to a decision, rather than the content of the decision. Such assessments would focus on abilities to state preferences, understanding and appreciate one's situation, and reason through a consequential decision. At some point, however, the content of the decision may also be taken as an indicator of whether a person is truly competent, but that would depend on the situation. Competency determinations are threshold judgments—the central issue is whether the patient may assert his or her right to make decisions; To decide that, you must be aware of a) what values are at stake, b) goals that the determination of competence is to serve, and c) an accurate prediction of the practical consequences of setting the threshold at this level rather than elsewhere. Standards of competency, then, are decided based on various factors, rather than "discovered," (i.e., existing independently of those factors).
Advance Directives
Living Wills Designated Proxy
The Substituted Judgment Standard.
The first standard for proxy decision-making is called "substituted judgment (also called the "subjective" by the Conroy court ruling). The standard is most appropriately applied in cases where the person has previously expressed wishes about what he or she would want for medical treatment if he or she every loses the capacity the make medical decisions. The standard rests ethically on the principle of autonomy. In the language of the Saikewicz court case, the standard requires the proxy decision-maker to "don the mantle of the incompetent," in other words, to make the decision the incompetent person would have made if he or she were competent. The proxy decision-maker is ethically obligated to draw on the statements, values, actions, and so on, of the patient to extend the incompetent's autonomy into their incompetent state.
Substituted Judgment
The following arguments are made in defense of substituted judgment. 1. Personal autonomy includes the right to control future by advance directives; 2. Protects incompetents against overzealous medical intervention; 3. Recognizes a role for family discretion; 4. Enables decision-makers to finesse decisions
Best Interests.
The following problems are argued against best interests standard. 1. Arras, however, points out how limiting the best interests standard to merely physical interests such as pain and comfort, in his words, "tends to reduce the patient from the full fledged person that she once was to the status of a mere physical repository of pleasures and pains." This is confirmed in the Conroy ruling. 2. It is difficult, though, to graft these onto best interests standards, because patients may not be experiencing (self-consciously) loss of dignity; so we have to rely on previous expressions in this regard, which is substituted judgment. 3. Arras: Best interests standard ethically appropriate in most cases involving incompetent patient, but it is problematic when applied to persons who lack "all fundamentally human capacities," such as PVS patients; patient has ceased to be a person in any meaningful moral sense; it is then plausible to consider interests of other parties.
Current Interests.
The following problems are argued against the current interests standard: 1. Dresser and Robertson acknowledge the difficulty of obtaining reliable information about the patient's current interests—determining whether current circumstances provide "a life worth living." They say this problem is surmountable in most cases. But as Arras argues, the evidentiary value of aversive behavior is problematic. How do you interpret pulling on a feeding tube? Does is mean the patient's current interests are in refusing life-sustaining treatment, or merely that the feeding tube is irritating, or something else? 2. Determining whether current experiences constitute "a life worth living 3. Current interests may conflict with long-held value judgments. For example, a patient of the Jehovah's Witness faith may have a current interest in staying alive, but that would conflict with previous religious-based wishes to avoid blood transfusions. 4. Other standards like best interests or combination standards are more likely to take account of personal identity continuing over time.
The Best Interests Standard
The second standard for proxy decision-making is the "best interests standard" (called the "objective" standard by the Conroy court). It is most appropriately applied in cases where a person's previous wishes are not know or could never have been known , such as with persons who have never been competent. The standard rests ethically on the principles of nonmaleficence and beneficence. Most commonly, its application focuses on balancing physical harms, and risks, versus benefits to the patient. The last phrase is important to note, as it may often be the case that the interests of others—family or medical staff—may creep into consideration here. For example, it may be tempting for health care providers for an elderly, severely demented patient on kidney dialysis to argue that it is in the bests interests of the patient to be removed from dialysis and allowed to die, when in fact, the burden may lie as much on the caregivers and health care team as on the patient.
Incompetent Patients
There are two types of incompetent patients: previously competent and never competent patients.
Disadvantages/Difficulties
They may not be available when needed. There may be uncertainty of medical condition and prognosis The document may lack of instructions specific enough to cover the current situation The instructions in the document may need interpretation—do the wishes expressed there apply to the current situation? There may be a tension between stated wishes and contemporaneous interests. For example, a person may have said that they don't want continued treatment in their current situation, but he or she nevertheless seems relatively happy. This is the tension between the "substituted judgment" and "current interests" standards of proxy decisionmaking.
As ethicists Eisendrath and Jonsen point out
advance directives 1. promote patient autonomy to a greater degree and with greater certainty; 2. help avoid unacceptable circumstance that the patient would consider a harm or wrong—such as pain and suffering and loss of dignity, and 3. lessen burdens on caregivers and health care providers by absolving them of difficult decisions. Researchers from the Oregon Health Sciences University report in Nursing Research that stress levels are "most severe" for family members who must make decisions about withdrawal of life support, and "least severe" when advance directives are available to guide them. By comparison, they describe stress levels as twice as high as during crises such as losing a home to fire. Even months later, stress levels were still high. The study also indicated that in the absence of advance directives, families were more likely to encourage life-prolonging treatments, even if those treatments were not effective or caused additional patient suffering. Clearly, then, advance directives can be a benefit for all involved: caregivers receive guidance, patients have their wishes respected and may suffer less, families have their stress reduced, and our health care system can save financial resources. The Patient Self-Determination Act (PSDA) was a federal act enacted in 1990, basically requiring all health care institutions receiving federal funds, like Medicare or Medicaid, to be given written information about their rights under their state laws regarding treatment decision-making, including the right to accept or refuse life-sustaining treatment. This typically amounts to a person receiving a copy of an advance directive and other written instruction with their admission packets—not a great time to be thinking about how one wants to die. One caveat: advance directives are often of little use when they are not accompanied by conversations with physicians and family members about your values and desires. Advance directives often require interpretation of what the patient wrote. Having those conversations is the best place to start.
Designated Proxy
decision-maker (The terminology varies. In Montana, the "proxy" decision-maker is, legally, a person with "durable power of attorney for health care." This designation gives the proxy decision-maker the authority to make decisions for the patient, with or without further written specifications of the patient's wishes. In any case, the surrogates first ethical duty is to decide about treatment on the basis of what is known about what the patient would have wanted. Something of patients' wishes and values can be known explicitly or implicitly from the narratives of their lives, what they've said and what they've done. Surrogate or proxy decision-makers often look to a person's utterances and overall biography to discern what a person would want done in a particular medical circumstance in which that person can no longer decide for himself
The Conroy ruling
gives good issues to consider when considering a person's the validity of an incompetent patient's previously expressed wishes: 1. Remoteness: how far distant, in time and circumstance, is the patient now from when he or she expressed wishes about what he or she would want if incompetent? 2. Consistency: Have the patient's wishes and values remained consistent since they were expressed? 3. Thoughtfulness: Do the patient's previous expressions of what they would want for treatment reflect thoughtfulness? 4. Maturity of person at time of statements: Was the patient and his or her values mature or were expressions made during a time of immaturity? 5. Specificity: How specific were the patient's expressions relative to current circumstances? Do they apply now?