Patients with Compromised Capacity
Dr. John Benedict has agreed to offer dental services to residents at Riverside Retirement Center and Nursing Home who do not have their own dentist. Recent changes in state law require that a dentist examine every nursing home patient at least once a year. Martha Morris, a seventy-eight-year-old widow who has lived at Riverside for eight years is one of his first patients in this new role. Dr. W. C. Elbinger, who died five years ago, was her previous, longtime dentist, and she has not had a dental examination since before he died.
Mrs. Morris’s forty-eight-year-old son visits her regularly and now brings her to Dr. Benedict’s office. He knows enough about the previous dentist to say that Mrs. Morris liked the man and his work very much; she takes great pride at still having all her natural teeth. The son says she received periodontic scaling on several occasions since she first came to Riverside because, at least twice, she needed repeat visits to Dr. Elbinger’s to complete the treatment. Mrs. Morris never mentioned a desire to see a dentist to her son or to the nursing home staff after Dr. Elbinger died, and her son never thought about it. Mrs. Morris has suffered increasing memory loss and other mental deficits over the last four and a half years—caused by a continuing series of TIAs (transient ischemic attacks) during that time.
When Dr. Benedict talks with her, Mrs. Morris recognizes that she is in a dentist’s office and that Dr. Benedict is not her former dentist. She cannot remember Dr. Benedict’s name, though, and asks him what it is every few minutes. With each telling, many details of her report about her last dental visit vary, including when it was. She repeatedly expresses, though, her great satisfaction in having never needed a prosthesis, crediting it to her previous dentist and her own lifelong oral hygiene.
Unfortunately, it is clear that Mrs. Morris’s oral hygiene has not been maintained for some time—perhaps since her mental functioning began to wane four and a half years ago. Many nursing homes, otherwise quite well run, do not adequately emphasize daily oral hygiene for their patients. Dr. Benedict suspects that Riverside may be one of these and makes a mental note to forcefully press this matter with Riverside’s medical director at their next meeting.
But that will not help Mrs. Morris’s current condition. The periodontal involvement of the upper and lower posterior teeth is so advanced, bilaterally, that Dr. Benedict sees no alternative other than maxillary and mandibular partial dentures. Even major periodontal treatment, including surgery, bone grafting, and selective implants will not save the teeth; all have class III mobility and would need transitional stabilization to delay discussion of full upper and lower dentures. Dr. Benedict even wonders why Mrs. Morris is not experiencing considerable pain.
Dr. Benedict, after explaining his findings to Mrs. Morris and her son, asks her, “Does it ever hurt when you chew?”
“No, my teeth are wonderful,” she answers. “Dr. Elbinger and I made sure of that.”
“Is she on a regular diet,” he asks the son, “or on a soft diet? A soft one would put less strain on her teeth.”
“She started complaining a while ago that the dining room was serving tougher meat than they used to,” says her son. “She may have been having a problem chewing, but institutional food is never terrific, so I never thought about her teeth being the problem.”
“My teeth have never been a problem,” says Mrs. Morris, “and I take good care of them. I intend to take every one of them to the grave.”
“I’m afraid, Mrs. Morris,” says Dr. Benedict once again, “that your back teeth are all very loose because the gums and bone have become diseased. There is no way we can correct the problem without removing a number of those teeth and giving you a partial denture to wear, one for the top and one for the bottom.”
“Do you mean false teeth?” asks Mrs. Morris in horror.
Dr. Benedict shows her samples of upper and lower partials and, with a diagram, points out which of her teeth cannot be saved.
“I don’t want those things,” she says adamantly. “I’ll never ever wear false teeth! After all my years of taking care of them and all of Dr. Elbinger’s good work, you’re not going to take my good teeth out and give me false ones!”
What should Dr. Benedict do and why?
For patients unable to participate at all in a treatment decision, two notions are widely accepted as the best guidelines for making ethically correct treatment decisions both within the health care community and in American society more broadly. In addition, for patients who are best described as being “partially capable” of participating in treatment decisions—rather than “not capable at all”—these two guidelines are a good place to start the discussion as well. The first of these guidelines is to do whatever the patient would choose in the situation if he or she could choose. This guideline is sometimes called the principle of “substituted judgment”—that is, another person’s decision substitutes for the patient’s but precisely in choosing what the patient would choose if he or she could do so. Obviously, however, the judgment that a patient would choose a certain course of action, if he or she could, is a hypothetical judgment. It is a hypothetical judgment about what would be the case and is, in fact, based on a hypothesis that is contrary to the facts of the case, for the fact is that the patient is not able to choose his or her treatment. This means that the judgment that a patient would choose a certain course of treatment if he or she could must always be accompanied by another judgment—a judgment about how dependable the first judgment is. That is, the evidence that supports the first judgment, about what the patient would choose, must continually be tested to make sure the first judgment has strong enough support for it to be reasonably used to guide treatment decisions for the patient.
Some writers propose that the moral basis for using this guideline is respect for autonomy. That cannot literally be the case, however, because the treatment in this kind of case is for a patient who is incapable of choosing autonomously. There is no autonomy, in the strict sense, for us to respect. What is being respected instead, in this guideline, is a different feature of human beings—that is, the value that most human beings associate with acting consistently over time and living by a fairly consistent set of values over the course of one’s life. For most human beings, one of the most important values is achieving a sense of being one within oneself—of what in the 1960s was called “getting it together,” of what might quite accurately be spoken of as integrity. This is the value that the guideline of choosing what the patient would choose if he or she were able tries to preserve for the patient, the value of living consistently according to a set of values over his or her lifetime.
In some instances, patients provide sufficiently detailed directions about their health care ahead of time so that, although they are incapable of decision-making when the decisions must be made, those who make the decisions for them can be fully confident that they are doing what the patient would have chosen if he or she were able. Medical Advance Directives are often not detailed or specific enough, however, to guide decision makers and caregivers, and detailed Advance Directives specifically about dental care are almost unheard of. So decision makers and caregivers must frequently interpolate what treatment the patient would choose in the present situation on the basis of other sorts of data from other situations in the patient’s past. For example, family members or friends, or perhaps the health care provider personally, may have had conversations with the patient about conditions the patient wants to avoid or treatments the patient would never choose under any circumstance. Or these individuals may have a fairly clear understanding of the values, goals, or ideals of conduct that guided the patient during his or her past, and they may be able to use this information to judge what the patient would choose in this situation if he or she could do so.
But, obviously, many patients will not have given signals as helpful as these. Even then, if enough data about a patient’s previous choices or values is available (although none of the items is clearly indicative alone) a total picture may still emerge that could support a judgment that the patient would choose a certain course of action if he or she could. Often, though, there is not enough data, the data available is not clear enough, or there is contradictory data from different sources and a dependable judgment about what the patient would choose is not possible. In such a case, when the judgment about what the patient would choose is not well supported or is doubtful for some other reason, then this first guideline cannot determine treatment decisions, and a second guideline must be used.
The second guideline is to do whatever is in the patient’s best interest—that is, what maximizes the patient’s well-being. This is the guideline to follow when the first guideline—doing whatever the patient would choose if he or she could choose—cannot be followed because we do not have strong enough evidence to determine what the patient would choose. This second guideline is also the guideline to follow with regard to patients who have never been able to make their own choices—for example, small children and those who have had severe mental deficits from birth. For these are patients who have had no opportunity to exhibit the kind of commitment to certain values, ideals, and ways of life that we need to look for as evidence for judging what they would do if they could.
Note that best interest necessarily refers to the best net well-being of the patient; this is therefore what is to be sought according to this second guideline. This is because every course of action for every patient involves both benefits and burdens—such as losses, costs, and pains. Note also that whatever is in the patient’s best interest is not necessarily what the patient would choose if he or she could choose in the situation. That is, the first guideline preserves the patient’s option to possibly act in a way that is not in his or her own best interest. A patient, for example, may choose for the sake of some other person or group or for some other reason. Consequently, the second guideline will not necessarily pick out the same action to be performed for a patient that the first guideline would pick out—provided there is sufficient evidence that the first guideline can be used at all. When the second guideline is used, though, the range of alternative actions to be considered narrows because only courses of action that are arguably in the patient’s best interest can be considered.
Sometimes people are uneasy with a guideline that tells them to do something in another person’s best interest because, they say, they are not necessarily privy to what the patient would consider to be in his or her best interest. But the second guideline does not instruct us to do what the patient would consider to be in his or her best interest. If we had enough data to determine what the patient would judge to be in his or her best interest, we probably could reasonably judge what the patient would choose in the present situation. In that circumstance, we should act according to the first guideline because the first guideline should be applied first if it can be applied at all. (That is, in technical terms, these two guidelines are “lexically” ordered because the second guideline comes into play only when the first cannot be used because sufficient data about the patient’s interests and values is not available). Therefore, the person or persons judging what would be in the patient’s best interest must use their own best judgment, taking into account whatever information about the patient and about human beings generally is available to them. In such an analysis, they must simply make the best judgment about the patient’s best interests that they can.
Dentists in the United States know that a minor child’s parents have a legal right to choose dental treatments for their child and that court-appointed guardians have the same legal right to choose treatments for their wards. The presumed moral justification for such legal structures is that, ordinarily, parents are the parties most concerned about their child’s best interests and are, therefore, most likely the best judges of what will maximize their child’s overall well-being. The sense of obligation that accompanies the role of a court-appointed guardian, plus the courts’ efforts to select, in each case, the best person for this role, presumably provides a similar likelihood that the guardians’ treatment decisions will best serve their wards’ interests. Yet there are many cases where parents or legal guardians make choices to the greater or lesser detriment of a child’s or ward’s health.
Many health care providers want to argue that, in matters of health care, dentists, physicians, nurses, and other professionals are at least as committed, by their professional roles, to the well-being of the incapable patient as are parents or guardians and that, in health care matters, they are almost always better informed about the child’s or ward’s best interests. Instances of children or wards being ill served by their parents or guardians, then, make many health care professionals doubt the wisdom of current legal structure. When, however, health care providers believe a particular child or ward is being harmed by parents’ or guardians’ treatment decisions, the only recourse under current law, except in emergencies, is to make use of the legal system.
Of course, dentists and other health professionals may still ethically decline to act as a parent or guardian chooses; it is simply a fact of dental practice that dentists’ obligations, as health professionals, sometimes point them toward a course of action different from what appears to be required by law in its determination that parents and guardians are to make the final decisions about treatment. Simply declining, however, will sometimes leave the child or ward in serious need of dental intervention; the dentist’s refusal to treat, then, will ordinarily require—both ethically and legally—that the dentist help parents or guardians find another dentist to care for the patient. (In chapter 10, the section titled “Firing the Extremely Uncooperative Patient” provides a more detailed look at dentists’ refusal to treat.)
In extreme cases, a dentist’s professional obligation may require using the courts to try to override the law’s presupposition in favor of a parent’s or guardian’s judgment of a patient’s best interest. In addition, laws about reporting child abuse or elder abuse may be relevant. Such laws have grown stronger in recent years, and it might be argued that the presupposition in favor of parents and guardians is becoming more qualified in American society. Such changes in the law have not made dentists’ choices any easier, though, when their judgment of what is best for a patient runs counter to the judgments of parents or guardians about what ought to be done for the patient. (Court-mandated reporting is discussed in chapter 10.)
A question asked in chapter 6—how much sacrifice of time, effort, or other interests does a dentist’s professional commitment require?—is relevant to the amount of legal risk that a dentist is professionally committed to face for the sake of his or her patient’s well-being. On this matter there are no clear statements anywhere in the ethical literature. The larger community continues to support, however, the general presupposition of current law that favors parents and guardians, even when bad judgments on their part are known to occur. This continuance of legal support for parents and guardians can also be taken as evidence, then, that dentists and other health professionals are not considered to be under obligation to face extreme legal risks when the risks to the incapable patient’s health are not extreme. Dentists, because of their commitment to their patients’ dental and general health, will often feel quite guilty in such situations; they become concerned that the failure is theirs for not successfully educating the patient or guardian who makes a bad choice for a patient. But there are limits, both human and professional, in how much a dentist is required to try to change a parent’s or guardian’s choice, provided the risk to the patient is not one of extreme harm. When the risk of harm is extreme, however, the dentist may well be obligated, as stated above, to try using the legal system to prevent harm, with all the sacrifices (and possible legal risks) that this might involve.
At the other end of the spectrum, many patients and guardians happily collaborate with the dentist in the decision-making about the dental care of their child or ward. Obviously, it is not possible for a dentist to establish an Interactive Relationship with a patient who is incapable of autonomous decision-making. Still, in addition to the two guidelines explained in the previous section, the dentist should also strive to attain the professional ideal of an Interactive Relationship with the patient’s parent or guardian when making a treatment decision for a patient incapable of participating in that decision-making process. (Some patients, arguably a great many of them, are capable of partial participation in treatment decisions; their situation will be discussed in detail below.) Nevertheless, the final decision-making role assigned by the law to parents and guardians—and the dentist’s dependence on parents and guardians for information about the patient that a dentist needs to act on the two guidelines discussed above—are excellent reasons for dentists to use their relational skills to develop as interactive a decision-making process as possible in dealing with the parents and guardians of incapable patients.
This chapter has focused, up to this point, on patients who are wholly unable to participate in treatment decisions. The most clear-cut examples of such patients are infants and patients who are unconscious. But most dentists rarely treat patients of either of these types, and there are many people in the larger health care system who fall neither into the category of wholly incapable of participating nor into the category of fully capable of participating.
In other words, the simple division of patients into those who are fully capable and those who are wholly incapable is inadequate. Our thinking about patients must be replaced with a finer-tuned set of concepts, and additional ethical guidelines must also be identified about treatment decisions for those patients who are neither wholly incapable nor fully capable. These norms will be examined in the next section. As indicated above, such patients will be referred to here as partially capable patients.
In order to make determinations about patients’ capacity to participate in decision-making, however, it is necessary to identify the characteristics that we attribute to someone who is capable of autonomous decision-making. This section will identify five distinct sets of such characteristics and, along with these characteristics, it will describe some of the corresponding ways in which the capacity for autonomous decision-making can be diminished.
Before proceeding, however, it is important to stress that when a dentist is judging a patient’s capacity for autonomous decision-making, the focus should be on the decision at hand; it is the patient’s capacity for that decision that is at issue. Patients whose capacity for autonomous decision-making is significantly compromised in some areas of their lives may still, nevertheless, be quite capable of making a decision about a particular treatment that the dentist is recommending or of deciding between possible treatments that are within the standard of care for the patient’s condition. In the same way, a patient who is able to make decisions about many other areas of his or her life may, nevertheless, be compromised when it comes to making a decision about a needed dental treatment. The core components of the human capacity for autonomous decision-making fall into five fairly distinct categories:
- The ability to understand the relationship of cause and effect
- The ability to recognize the alternative courses of action that are available for choice and to choose between them (as indicated in chapter 6, we take for granted that the activity of choosing among alternative courses of action is distinct from the activity of reasoning and judging about alternatives, whether before or after choosing one of them)
- The ability of a person to conceive of himself or herself as one who can choose between the alternatives in a given situation
- The ability to reason comparatively about alternative courses of action in order to reach a moral judgment about them
- The ability to form and choose values, principles of conduct, and personal ideals to guide one’s moral judgments and shape one’s moral reflections and conduct accordingly
Two different perspectives are useful in discussing each of these categories, although a detailed analysis of each category from both perspectives would be a major undertaking and is well beyond the scope of this book. One is to focus on what abilities a growing child must develop for adults to think of him or her as a fully capable decision maker. The other focuses on the kinds of deficits observed in those who have developed a fuller capacity for autonomous decision-making but who then experience some loss or diminishment in that capacity.
Understanding Cause and Effect
For the first category, consider a child’s developing ability to understand the relationship of cause and effect—both in general and in matters affecting the child’s body and health, the oral cavity, and the child’s oral health. At some point, a child starts to understand a cause-effect connection between tooth brushing and healthy teeth, for example, or between a dentist’s removal of a carious lesion and placement of a restoration that leads to the cessation of pain in chewing.