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 Feeding
Dilemmas and Medical Nutrition Therapy Education By Sari Edelstein, PhD, RD Today’s Dietitian Vol. 8 No. 7 P. 12 Feeding dilemmas continue to plague dietitians and attract front-page coverage in the popular media, especially with the recent story of Lucy McGowan, which recalled the court cases of Terri Schiavo, Nancy Cruzan, and Karen Ann Quinlan—although there are many differences among the cases.1-4 In many ways, the McGowan case is more troublesome for practitioners, as it involved end-of-life issues not related to accident or catastrophic event. McGowan was a 100-year-old woman with pneumonia, brain infection, and semiparalysis; Schiavo, Cruzan, and Quinlan were brain-injured middle-aged women (see “Court Cases With Feeding Tube Dilemmas” sidebar for court case details). What they had in common was that all could be kept alive by a feeding tube. Once used as a temporary method to feed younger patients recovering from illness, feeding tubes are now widely used in older patients. The Wall Street Journal indicates that 75% of feeding tubes are being used among patients with Medicare.1 Many of these patients are like McGowan: without hope for recovery. The question must be asked: “Why insert the tube?” The honest, though cold and legalistic, answer is, “Because technology allows us to delay death when living wills are not available and self-determination is unknown or in question.” Institutions are afraid not to use this simple rationale for what many people see as an unnecessary, perhaps unwanted, intervention. This is not a pleasant topic—and it will get worse. We still wrangle with right to live and right to die questions. The dietetic practitioner must remember that while the utilization of a feeding tube is not new, their use in cases of futility is growing. The purpose of this article is to assist dietitians in defining their role in feeding dilemmas inclusive of all burdens to the patient and measure how the dietetics curriculum has transformed over the years to address this controversial topic. The Dietitian’s Role Other medical and nutritional organizations have remarked about the role of the dietitian in nutrition care issues and dilemmas, including the American Society for Parenteral and Enteral Nutrition, which has stated that dietitians’ role in nutrition care has been to recommend an adequate source and amount of balanced nutrients according to preestablished standards of care.6 These statements affirm that dietitians have an active role in the care and support of feeding patients. Thus, dietitians should: • be informed about the rights and desires of the patient and/or family; • be informed about the severity of illness and complications of treatments, inclusive of the benefits and burdens of feeding by all conceivable routes; • be active in the patient’s care, reporting on the nutritional status of the patient and advising the physician and medical team; and • be informed of legal decisions that may help determine the route of care for the patient, such as more aggressive or palliative care. As early as 1988, Schiller pointed out that dietitians are involved in difficult decisions about feeding patients in both the right to live and right to die situations.7 These may include the following: • the problem of providing nourishment to competent patients who refuse feeding; • “benefit vs. burden” questions, especially in terminally ill and/or end-of-life patients; and • incompetent patients who may or may not have families to help determine their wishes for feeding. Usually, the dietitian’s role in feeding dilemmas has been seen as secondary, with the physician assuming a dominant role. In reality, the dietitian is an important link in the chain of care decisions, often serving as consultant or fact gatherer for the physician and/or medical team. Through the presentation of relevant information, the dietitian becomes a part of the bioethics decision-making body that assists patients in their care. As cases like McGowan’s increase in number and complexity, RDs will have even more responsibility; their training must progress concurrently. Bioethics Curriculum To determine whether college- and university-based nutrition programs included bioethics in the medical nutrition therapy curriculum, the ADA sent an e-mail questionnaire in 2003 to dietetic program representatives. Recipients had identified themselves as program directors and/or contacts for dietetic education programs within their college or university, limited to undergraduate and graduate dietetics and university-based programs in the United States. Recipients with a current e-mail address on file with the ADA represented 231 programs. Subjects were asked to participate as volunteers and may have declined if desired. Only those completing and returning the survey, and who met the final criteria of program type, were included in the results. The study replicated a similar study conducted by the same researcher in 1989. The 1989 results included undergraduate dietetics and nutrition programs called coordinated undergraduate programs (CUP), which were defined as “academic programs in a regionally accredited college or university culminating in a minimum of a bachelor’s degree and [including] didactic instruction and a minimum of 900 supervised practice experiences, which may be planned concurrently with or following the didactic component.”8 The 1989 results included graduate dietetics and nutrition programs called Applied Practice 4 (AP4) programs, which were defined as “supervised practice programs sponsored by a health care facility, college or university, federal or state agency, business or corporation and [including] a minimum of 900 hours of supervised practice experiences.”8 Differences between programs in the two surveys should be considered when evaluating the results. Results and Discussion In contrast, the findings indicate an increase in bioethics education within another dietetics course from 47% (n = 8) in 1989 to 67% (n = 34) in 2003. Topics of bioethics education, as a part of another course in the dietetics curriculum, are listed in Table 1. Responses representing 20 dietetic graduate programs in 2003 were compared with six responses of AP4 programs from 1989. The findings indicated that the existence of a stand-alone bioethics course in the graduate dietetics curriculum sharply diminished from 50% (n = 3) in 1989 to 10% (n = 2) in 2003. But, the findings were reversed when the incidence of bioethics education as a part of another course improved from 33% (n = 2) in 1989 to 70% (n = 14) in 2003. In 1989, 61% (n = 14) of the 23 combined undergraduate and graduate programs had bioethics education in the dietetics curriculum. These courses were either a stand-alone course or part of another curriculum course. In 2003, the 77 combined undergraduate and graduate programs had the presence of all types of bioethics in the curriculum of 70% (n = 54). This indicates that bioethics education has increased from 61% to 70% in 14 years. The study’s goal was not only to determine whether bioethics education had changed in presence as a stand-alone course or as a part of another course but also to determine whether bioethics education as a whole is increasing. In 1989, we had yet to experience the Cruzan case. In the years since Cruzan, other prominent cases have taught us that dietitians need to be educated in feeding and other issues that ask ethical questions and require learned reasoning. Learned ethical reasoning should be an integral part of dietetics education in a variety of venues and is recommended as both individual courses and as important material for discussions within other class forums. See Table 2 for proposed bioethics curriculum outline from survey responses. Moral Development The research of Lawrence Kohlberg has provided one of the most well-known approaches to measuring moral development, which is directly related to how a person makes moral judgments within a society.9 Kohlberg describes moral judgment development in levels and stages, which range from purely egocentric actions to behaviors that show concerns for society and rightness. Stages of moral development pass through three levels: preconventional, conventional, and postconventional (or principled level). • Preconventional. The preconventional level involves two stages and is based on moral reasoning, which is egocentric. During stage 1, the reasons for “doing right” are described as the avoidance of punishment by being obedient to the rules of authority. The interests of others are not considered, nor are they recognized as being different from one’s own. Actions are judged in terms of the physical consequences. Stage 2, instrumental morality, suggests that people act to serve their own interests. There is now a perspective that other people have interests, and so conflicts are dealt with through equal treatment and gaining good will. They make fair deals in exchanging concrete things or services. • Conventional level. The conventional level begins with stage 3 where there are mutual interpersonal expectations, relationships, and interpersonal conformity. Right is defined as playing the role of the good person by being concerned, loyal, and following rules and expectations. Individual relationships are put before personal interests, but there is no consideration of a generalized social system. Stage 4 is the stage of social system and conscience maintenance. Right is doing one’s duty to society and upholding the social order. The social system defines roles and rules. Kohlberg described a transitional level between conventional and principled, which is postconventional but not yet principled. Choice is based on ideas of “duty” and “morally right,” which are arbitrary—that is, obligations are a result of picking and choosing without a governing principle. The perspective is of one who is outside the system making decisions without commitment to society. When moral decisions are generated from rights, values, or principles agreeable to a society that is fair and beneficial, the third level, postconventional and principled, is reflected. • Postconventional (principled). Stage 5 is characterized by the concept of prior rights and social contract and represents right as upholding basic rights, values, and legal contracts even when they conflict with group rules and laws. An individual’s rights, such as life and liberty, should be upheld regardless of the majority opinion. An obligation exists for the protection of the individual’s rights. The social perspective of stage 5 integrates the formal mechanisms of agreement, contract, objective impartiality, and due process. The perspective takes in both moral and legal points of view, which sometimes conflict and are difficult to integrate. Stage 6 of moral development is characterized by an individual’s belief in universal ethical principles. The basic moral premise is respect for persons exemplified by equality of human rights and the dignity of human beings as individuals. When laws violate ethical principles, one acts according to ethical principles, such as justice, equality of human rights, and respect for dignity of human beings as individuals. There is a natural progression through the stages of moral development. A person predominantly at one stage elicits responses to moral dilemmas congruent with that stage. Stages are progressive because of the greater reasoning capacity demonstrated at the higher stages of moral development. Reasoning at higher stages is more differentiated, more integrated, and more universal. It should be noted that moral development does not occur automatically, and individuals may not progress. Progression through the stages is determined by one’s exposure to social complexity and the opportunity to question and discuss ethical decisions. Table 3 describes Kohlberg’s stages and levels with an interpretation by the researcher how this may reflect the dietetic practitioner’s moral judgment of caring for a patient dilemma. Measuring Moral Judgment The scoring method we use today for the interview responses was developed by James Rest and has been shown to validly assess the relationship between the moral judgment and the moral development stage of the individual.10 Rest’s version of Kohlberg’s Moral Judgment Interview is called the Defining Issues Test (DIT). This article remarks about only two of the studies that validate the use of the DIT for assigning stages to individuals, as there are many more research examples in the literature. Hanford gave a pretest and posttest DIT to nursing students (n = 32) before and after an ethics course.11 The nursing students scored 41.60 (denoting stage 4 moral judgment) before the course and a statistically significant (P < 0.05) 55.10 at posttest, denoting stage 5 moral judgment. Controls scored 46.30 at the time of the pretest and 51.00 at the time of the posttest (no ethics course was administered) and did not achieve statistical significance. Rest and Thoma also administered the DIT before and after an ethics course to 39 college students.12 Junior-level college students scored a statistical significance (P < 0.05) with a moral judgment score of 36.80 at pretest and 51.50 at posttest. In the studies represented, posttest moral development increased after bioethics training (of various types). While not all bioethics courses were uniform, the research shows that moral development increases with a large range of treatments. For future dietitians, the topics and concepts represented by the cases shown are recommended. As the incidence for the use of the feeding tube increases, as well as other feeding dilemmas, it will become even more necessary that dietitians have appropriate education that enables them to consistently provide expertise on the benefits and burden of feeding modalities. — Sari Edelstein, PhD, RD, is an assistant professor of nutrition at Simmons College in Boston. She has written several books and professional articles.
2. Schindler v. Schiavo (In re Schiavo), 851 So. 2d 182, 2003 Fla. App. LEXIS 8342 (Fla. Dist. Ct. App. 2d Dist., 2003) Court Florida District Court of Appeal, 2d District. 3. Cruzan v. Harmon, 760 S.W. 2d 408, 411 (Mo. 1988) (en banc), cert. Granted, No. 88-1503 (1989). 4. In re Quinlan, Supreme Court of New Jersey (1976) 70 N.J. 10, 355 A. 2d. 647. 5. American Dietetic Association. Position of The American Dietetic Association: Ethical and legal issues in nutrition, hydration, and feeding. J Am Diet Assoc. 2002;102(5):716. 6. American Society for Parenteral and Enteral Nutrition. Standards of Practice for the Nutritional Support Dietitian. 2000. 7. Schiller MR. Ethical issues in nutrition care. J Am Diet Assoc. 1988;88:13-15. 8. American Dietetic Association. Directory of Dietetics Programs, 2001-2002. 9. Kohlberg L. Stages of Moral Development as a Basis for Moral Education. In: CM Beck, BS Crittenden, and EV Sullivan (Eds). Moral Education. New York: Newman Press, 1971, pp. 170-171. 10. Rest JR. DIT Manual. University of Minnesota, 1988. 11. Hanford L. Ethics and disability. Br J Nurs. 1993;2(19):979-982. 12. Rest JR, Thoma SJ. The relationship between moral decision making and patterns of consolidation and transition in moral judgment development. Developmental Psychology. 1999;35(2):323-334.
While Schiavo’s husband was acting in good faith as a legal surrogate or proxy for an incompetent person, the Florida legislature eventually intervened and allowed the governor a one-time stay to prevent nutrition and hydration from being withdrawn from a patient in a persistent vegetative state when there is disagreement among family members about the decision and there are no written directives in place. Schiavo was later allowed to die with the absence of feeding through her tube.2 Cruzan v. Director, MDH (1990). Nancy Cruzan was in a car crash that left her in a persistent vegetative state. But, at the insistence of U.S. Attorney General John Ashcroft, who was then Missouri’s state attorney general, Cruzan was kept alive by a feeding tube despite her family’s wishes. Cruzan’s parents fought for the better part of a decade to have her feeding tube withdrawn. Finally, in a landmark decision, the Supreme Court ruled that receiving food and water through tubes administered by nurses and doctors constitutes medical treatment and that if there is clear and convincing evidence about what a patient would have wanted, the feeding tubes can be withdrawn. Chief Justice Rehnquist wrote for the Supreme Court’s majority, holding that “... a State may apply a clear and convincing evidence standard [of the patient’s wishes] in proceedings where a guardian seeks to discontinue nutrition and hydration of a person diagnosed to be in a persistent vegetative state,” and that the Constitution gives “a competent person a constitutionally protected right to refuse lifesaving hydration and nutrition.”3 In re Quinlan (1976). In 1975, 21-year-old Karen Ann Quinlan stopped breathing for at least two 15-minute periods, resulting in severe brain damage. She was eventually diagnosed as being in a persistent vegetative state and was maintained on a ventilator and fed through a tube. Attempts to wean her from the ventilator were unsuccessful. As time passed, her doctors concluded that she would not emerge from the persistent vegetative state and her parents, after much agonizing, asked that she be removed from the ventilator. The hospital and her doctors refused. Finally, her father, Joseph Quinlan, petitioned a New Jersey court to order her removal from the ventilator. The court refused. He appealed the case to the New Jersey Supreme Court. In 1976, the New Jersey Supreme Court ruled in favor of Joseph Quinlan on the basis of a “constitutional right of privacy,” arguing that this unwritten right “is broad enough to encompass a patient’s decision to decline medical treatment under certain circumstances.” That a person could exercise the right to refuse treatment through another party was, in 1976, without precedent. Despite removal from the ventilator, Quinlan lived for nine more years, still sustained by tube feeding. In 1985, the year Quinlan died, another case decided by the New Jersey Supreme Court removed the distinction between the “extraordinary” means of a ventilator and the “ordinary” means of a feeding tube to sustain life.4
2. According to The Wall Street Journal, what percentage of feeding tubes
is used by those utilizing Medicare? 3. Nutrition care dilemmas include all of the following except: 4. The nutritional care of a competent patient is based on: 5. The use of feeding tubes for end-of-life patients is increasing. 6. A dietitian’s role in feeding issues may be secondary to the physician
but is important in fact gathering. 7. Stand-alone bioethics courses in undergraduate nutrition programs have
_________ in percentage from the years 1989 to 2003. 8. The topic of bioethics, as a part of another larger course in undergraduate
nutrition programs, has _______ in percentage from the years 1989 to 2003. 9. Stand-alone bioethics courses in graduate nutrition programs have _______
in percentage from the years 1989 to 2003. 10. The topic of bioethics, as a part of another larger course in graduate
nutrition, has _______ in percentage from the years 1989 to 2003. |
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