A Resource for the Catholic Health Ministry

Volume 17, Number 2 Spring 2009

HealthCare EthicsUSA A resource for the Catholic health ministry

In This Issue Feature Articles Ethical Currents Resources

PAGE 2 PAGE 9 PAGE 17 Redefining Death as a Way Managing Abnormal Bibliography: Ethics to Procure More Vital Organs: Pregnancies Prior to Committees in A Response Viability Long-Term Care Rev. John Tuohey, Ph.D.

PAGE 6 Of Note Promoting Human Dignity From the Field PAGE 18 Through Tube Feeding: PAGE 12 Finding the Mean Key Clinical John Paul Slosar, Ph.D. Considerations on Tube Feeding for Guiding Policy and Decision Makers in Catholic Health Care FEATURE ARTICLE

Redeﬁning Death as a Way to Procure More Vital Organs: A Response By Rev. John Tuohey, Ph.D., Director, Providence Center for Health Care Ethics, Providence St. Vincent Medical Center, Portland, OR

ecent ethical literature on organ donation in the An early challenge to the cardio/pulmonary definition came United States focuses on the reality that there are with the development and widespread use of CPR in the R far more patients on a waiting list for a transplant 1960s. With CPR a heart could sometimes be restarted, than there are donors. It is estimated that there are approxi- raising the prospect that if a heart stopped but could be mately 170,000 people living today in the United States restarted, the person was not dead — at least not yet — who are recipients of an organ donation, yet as many as because the cessation was not clinically irreversible. Con- 7,000 patients die annually because there are not enough cern about irreversible cessation of the heart was part of the organs available. It may be of interest to note that the 2007 discussion in 1967 when Dr. Christian Barnard performed Organ Procurement and Transplantation Network reports the first heart transplant in South Africa. Much controversy that in 2006 the increase in the number of living donors resulted at that time over questions as to whether the donor was lower than in any previous year. That year saw a 6% was in fact dead when his heart was procured precisely increase in deceased donors, but only a 2% increase from because it was restarted in the recipient.3 By the standard living donors.1 Not surprisingly, the ethical literature looks descriptive definition the donor was not technically dead; at the ethical issues related to increasing the availability of the dead donor rule had been violated. organs from deceased donors. This has resulted in a good deal of ethical discussion about the definition of death, The ability to restart cardio/pulmonary function made nec- who should be considered to be dead, why they should be essary a hermeneutical nuance with the standard definition: thought to be dead, and whether or not it even matters if a irreversible cessation has come to be understood not as phys- person is dead in the procurement of vital organs. These iological irreversibility, which may not exist, but as ethical questions are the focus of this analysis. and legal irreversibility. That is, when there is no ethical or legal obligation to attempt to rescue someone with cardio/ Defining the moment of death pulmonary resuscitation (CPR), the cessation is ‘ethically’ or The importance of an informative and practical definition ‘legally’ permanent, even if not physiologically permanent. It of death is grounded in the traditional belief that before is, therefore, not necessary to attempt CPR in every instance vital organs can be retrieved from a person, that person in order to determine physiological permanence of cessation, must first be known to be dead. This has come to be and it is permissible to restart cardio and/or pulmonary known as the ‘dead donor rule:’ a person must be dead to function in a donation recipient. A person is dead when be a donor of vital organs.2 The standard definition of there is no legal or ethical obligation to respond to death in use since before the 1960s spoke of the permanent cardio/pulmonary cessation that is not followed by sponta- and irreversible cessation of cardiac and pulmonary activity. neous resuscitation. Such persons are dead, and hence may The definition is descriptive of what death looks like so be donors of vital organs according to the dead donor rule. that it can be recognized. Once recognized, decisions about what can be done with the person’s body can be made, A second challenge to the standard descriptive definition of including vital organ retrieval. When someone had perma- death came from those patients who suffered severe neuro- nent loss of cardio/pulmonary function, it could be deter- logical damage and seemed to look alive only because they mined that the person was dead and their vital organs were attached to life-sustaining machines. The Harvard retrieved. Medical School offered a resolution to this problem in 1968 by expanding the definition of death to include what

Copyright © 2009 CHA. Permission granted to CHA-member organizations and Saint Louis University to copy and distribute for educational purposes. 2 has come to be known as “brain death.” 4 This definition of Because of the change of context from a definition of death was incorporated into the Uniform Determination death per se to an understanding of who is ‘dead enough’ to of Death Act in 1981.5 In this new context, death can be be a donor, we also see a change in the nature of the defini- defined as the irreversible cessation of all brain activity, tion itself. It is no longer descriptive and informational. including the cortex (higher brain) and the brain stem, irre- The definition is now utililitarian, giving a definition of the spective of cardio/pulmonary function.6 As with the more patient’s usefulness or availability as an organ donor. The traditional definition, the definition of brain death is also a definition is not meant to say what death itself looks like, descriptive or informational definition – it gives the infor- but to say if it is possible to consider someone as an organ mation needed to know whether someone is alive and donor. Under this scenario, it would be possible to have whether that person may be envisioned as an organ donor two patients with exactly the same neurological devastation under the dead donor rule. With both the cardio/pul- in the same ICU, one who is ‘dead enough’ to be a vital monary and brain function definitions for death, death can organ donor because he or she wanted to be such, and the be determined, and the dead donor rule preserved in the other who is not ‘sufficiently dead,’ because perhaps their retrieval of vital organs from donors. religious tradition prohibits organ donation. The dead donor rule is preserved, but the definition of who is dead Challenges to a descriptive definition of death — becomes highly situational and utilitarian. being ‘dead for the purpose of’ As early as 1975, before the brain death definition was Not being dead at all — giving up the dead incorporated into the Uniform Determination of Death donor rule Act, and since, the narrowness of the brain death definition The debate about whether someone can be considered dead has been challenged.7 An early and continuing leading for the purpose of being an organ donor is only one part of writer on the subject is Robert Veatch. In a 1975 article, the discussion. In 2003, Elysa R. Koppleman proposed that Veatch called for a definition of death that allows simply donation of vital organs need not be restricted to deceased for the irreversible loss of the ‘higher brain,’ the cortex, as a donors, and hence any definition of death is not especially definition of death.8 This change would allow more people important. Such donations she argues should be allowed to be understood as being dead and, therefore, available as from living patients with irretrievably lost higher brain donors of vital organs under the dead donor rule. function; i.e., people who are permanently unconscious.11 Koppleman’s ethical justification for this is that such a Veatch has suggested that people who want to be organ donation, and the patient’s subsequent death, would be donors upon their death should be able to choose between done only when it was consistent with the donor’s particu- higher brain, whole brain, or cardiopulmonary definitions lar history and interest. of death.9 Patients should be able to choose the definition that best fits their desire to be a donor as well as their own Veatch, commenting on Koppleman’s 2003 article, notes particular religious, cultural, or personal beliefs. What is that she is offering the same policies for organ procurement important to note is that this discussion is not about a defi- that he would like to see. The difference is that Veatch nition of death per se, a definition that allows us to know views the donor as dead and so the dead donor rule is pre- when someone is dead, but about creating a definition of served, whereas Koppleman abandons the dead donor rule death that will allow a greater number of organ donations. and hence sees many of the same donors as alive. The chief The definition is less about a description of the moment of point of disagreement is whether or not the patient should death than it is about defining someone as being dead for be understood as being dead. They do agree on a utilitarian the purpose of retrieving vital organs. In theory, someone policy that sees the clinical state of the patient (dead be- could be understood to be dead according to one of cause of neurological devastation or alive with neurological Veatch’s three different criteria of personal choice. Each cri- devastation) as being defined for the purposes of organ terion could make someone ‘sufficiently dead,’ or to use the donation. expression of Jay Baruch, ‘dead enough’ to be a deceased donor. 10 Although they agree on who can be a donor, even if they

Copyright © 2009 CHA. Permission granted to CHA-member organizations and Saint Louis University to copy and distribute for educational purposes. 3 disagree on whether or not that donor is dead, they do not For my part, I hold ethical concerns about a shift from an agree on the same strategy for increasing the number of informational and descriptive definition of death, a defini- organ donations, and this is insightful. Veatch claims that tion that tells us if one is dead, to a utilitarian definition, a doing away with the dead donor rule, as Koppleman sug- definition that tells us if one is sufficiently dead or dead gests, would require too many legal changes and weaken enough ‘for the purposes of’ organ donation. There is a societal prohibitions on killing. He concludes it would be critical need to increase the number of organs for donation, easier and less controversial to simply change the definition but such a utilitarian approach is to me hubris. Death is the of death so more people fit the dead donor rule as a way of ultimate existential moment of being, after which we mate- procuring more deceased donations.12 That, it seems to me, rially cease to be. Death defies purposefulness — death per reveals a clearly utilitarian approach toward increasing the se is never for the purposes of something else. When we die number of organ donations. we simply cease to be in this world. Whatever our religious or spiritual beliefs about what does or does not come after Robert Troug offers an interesting twist to this discussion in death, death itself is the end of our material being in this articles in 2003 and 2008.13 He writes that ultimately world. It is possible that some good may come out of one’s whether the patient is considered dead for the purposes of death, such as saving lives by donating organs. Death per donation, as Veatch says, or alive but available for the pur- se, however, is not death for that purpose; people do not poses of donation, as Koppleman says, is not important. die in order that organs might help others live, even if their Instead, what is needed is simply a correct understanding of death is ordered in such a way as to provide for that dona- the ethical principles of nonmaleficence and autonomy in tion as in organ donation after cardiac death.15 Death is the the allowance of all donations. Nonmaleficence holds, end of physical life – what we do with that end is another when applied to organ donation, that no one be harmed in matter. the taking of their organs. From this principle, Truog concludes that we may take these vital organs from patients A predominantly utilitarian approach to defining death, or who are neurologically devastated or imminently dying. procuring organs from the living, raises for me a concern Such patients it seems, whether we think of them as dead about the slippery slope: Where does such an approach to or alive, cannot be harmed by the loss of their heart, lungs, ‘being dead for the purposes of’ lead? If it can be that a kidneys, livers, pancreas, etc. Autonomy holds that we need patient is dead for the purposes of organ donation, might patient consent, and that all we need is patient consent. As they also be able to be dead for other purposes, such as long as there is proper consent to the donation, everything research? I can only imagine the medical strides we could that does not harm is permissible. Again, whether or not make if we were able to declare people in a permanent vege- the patient is technically dead or alive is not determinative. tative state legally dead for the purposes of research. Once we decide someone can be dead for the purposes of one A response social good, I am not sure of the criteria to be used to James McCartney writing in 2004 offered a critique of decide if they are dead for the purposes of some other Koppleman’s abandonment of the dead donor rule, but his social good. critique is applicable to the positions of Veatch and Troug as well.14 He doubts, purely as a practical matter, whether Finally, this approach, particularly as presented by Troug, Koppleman’s goal of procuring more organs by doing away over-plays I think the role of consent in ethical analysis. For with the ‘dead donor rule’ and taking organs from some liv- many ethicists and clinicians, it seems consent is the deter- ing patients, can succeed if the general public senses that mining factor in defining the moral status of an action. If there is ambiguity about whether the donor needs to be the patient or appropriate surrogate has consented and the dead first. One might make the same critique of Veatch’s procurement is not harmful to the patient, death not with- suggestion that one might be able to be ‘dead enough’ for standing (Troug), then organ procurement is by definition purposes of vital organ donation if people could choose permissible, whether it is a matter of considering this par- between higher brain, whole-brain, and cardiopulmonary ticular person dead (Veatch) or taking the organ when the definitions of death. person is by definition still living (Koppleman). In fact,

Copyright © 2009 CHA. Permission granted to CHA-member organizations and Saint Louis University to copy and distribute for educational purposes. 4 consent is not nearly so powerful ethically. Consent in the 14. Ad Hoc Committee of the Harvard Medical School to Examine the ethical tradition is a permission to do what is right; it does Definition of Brain Death, “A Definition of Irreversible Coma,” not make what is done right. Consent is not, like Double JAMA 205 (1968): 337-340. 15. President’s Commission for the Study of Ethical Problems in Effect, a principle of justification that allows in a particular Medicine and Biomedical and Behavioral Research, Defining situation what is otherwise ethically questionable or prohib- Death: A Report on the Medical, Legal, and Ethical Issues in the ited. Consent merely allows one to act on an otherwise Determination of Death, Washington, DC, 1981. 16. Because brain activity, unlike cardio/pulmonary activity, cannot be good option; it does not make the option per se to be resuscitated, irreversibility is both physiological and ethical/legal. ethically good. 17. As recently as 2001 Alexander Capron referred to the brain death definition as something that was “well settled and persistently unre- Conclusion solved.” Alexander M Capron, “Brain Death–Well Settled Yet Still Unresolved.” NE JM 344 (2001): 1244-1246. “Knowing when death has come, along with what can and 18. Robert Veatch, “The Whole-Brain-Oriented Concept of Death: should be done before and after it has arrived, has always An Outmoded Philosophical Formulation.” Journal of Thanatology been a problem for humankind, to one degree or anoth- 3 (1975):13-30. 19. Robert Veatch, “The Dead Donor Rule: True by Definition.” The er.”16 The 1981 report of the Presidential Commission American Journal of Bioethics 3 (2003): 10-11 See also “Abandon determined that one is dead in circumstances of irreversibly the Dead Donor Rule or Change the Definition of Death?” lost cardiac and respiratory function and/or irreversible loss Kennedy Institute of Ethics Journal 14 (2004): 261-276; “Donating of total brain function.17 Moving from these descriptive def- Hearts after Cardiac Death – Reversing the Irreversible,” NEJ M 359 (2008): 672-673. initions to a utilitarian definition seems to me to open the 10. Jay Baruch, “Dead of Dead Enough? Organ Donation: Myths, Facts, door to approaches to definitions of death that have more and Perception,” panel presentation by Rhode Island Ethics Net- to do with the procurement of organs than with knowing work Symposium, December 3, 2003. Presentation available at when a loved one has died, and the time to grieve has http://www.brown.edu/Departments/Center_for_Biomedical_ Ethics/events.html. arrived. With Hans Jonas in 1974, and to a large degree 11. Elysa R Koppelman, “The Dead Donor Rule and the Concept of with the President’s Council on Bioethics in 2009, I chal- Death: Severing the Ties That Bind Them.” The American Journal lenge the undue precision of our definition of death, and of Bioethics 3 (2003): 1-9. 12. Veatch (2004). its application to the social need for organs.18 With my col- 13. Robert Troug, “Role of brain death and the dead-donor rule in the league Art Caplan, I agree that “people are getting nervous ethics of organ transplantation.” Critical Care Medicine 32 (2003): that we’re pushing the standard of death in order to get 2391-2396; See also author reply 32 (2004): 1241, 2561; with organs. The public is afraid that surgeons in search of Franklin G Miller, “The Dead Donor Rule and Organ Transplantation.” NEJM 359 (2008): 674-675. organs for transplant will bend the definition of death to 14. James McCartney, “The Theoretical and Practical Importance of the get them.” 19 Dead Donor Rule” The American Journal of Bioethics 3 (2003): 15- 16. A descriptive, informational definition of death, irrespective 15. See Robert Steinbrook, “Organ Donation after Cardiac Death.” NEJM 357 (2007): 209-213. of its usefulness for obtaining organs for donation and 16. President’s Council on Bioethics, Controversies in the Determination transplant, seems to me to be the most ethical approach to of Death: A White Paper by the President’s Council on Bioethics. 2009 understanding and diagnosing the moment of death. 17. Presidents Council on Bioethics, Defining Death: Medical, Legal and Ethical Issues in the Determination of Death. 1981. 18. See Hans Jonas, “Against the Stream,” Philosophical Essays, From Ancient Creed to Technological Man, (Englewood Cliffs, New Jersey: NOTES Prentice-Hall, 1974), cited in Chairman Edmond Pellegrino’s 11. 2007 OPTN/SRTR Annual Report 1997-2006. “Personal Statement” of Controversies in the Determination of HHS/HRSA/HSB/DOT, at http://www.ustransplant.org/annual_ Death: A While Paper by the President’s Council on Bioethics. reports/current/chapter_ii_AR_cd.htm?cp=3 2009 12. Robert M. Arnold and Stuart J. Youngner, “The Dead Donor Rule: 19. Brandon Keim, “Bioethicists Save Organ Donation by Tweaking Should We Stretch It, Bend it, or Abandon It?” Kennedy Institute of the Definition Death.” WiredScience, January 13, 2009, at Ethics Journal 2 (1993): 263-278. http://blog.wired.com/wiredscience/2009/01/braindeath.html. 13. Michael A. DeVita, James V. Snyder, and Ake Grenvik, “History of Organ Donation by Patients with Cardiac Death.” Kennedy Institute of Ethics Journal 2 (1993): 113-129.

Promoting Human Dignity Through Tube Feeding: Finding the Mean* By John Paul Slosar, Ph.D., Ascension Health System, St. Louis, MO

s those who are integrally involved in the delivery example of “tube feeding,” or medically assisted nutrition of end-of-life care know far better than I do, there and hydration, through the lens of the directives, particular- A comes a point when the task of medicine becomes ly No. 58. primarily, if not solely, to care because it can no longer cure. Perhaps one of the most important virtues for those Considering Directive No. 58 who provide care for those living with a life-threatening ill- Contrary to popular opinion, or what I can only surmise is ness or injury is the ability to know when this moment has popular opinion based on my own experience as an ethicist arrived — not an instant premature, but not so late that working in Catholic health care, Directive No. 58 is not the dying person endures additional suffering. primarily about “tube feeding.” Rather, the directive is primarily about providing “nutrition and hydration to all This virtue is the capacity for a truly prudential moral patients, including patients who require medically assisted judgment regarding the use of life-sustaining technology nutrition and hydration. …” The very fact that the subject within the Catholic moral framework. The Ethical and of this directive is the provision of “nutrition and hydra- Religious Directives for Catholic Health Care Services, 4th ed. tion” and that the object is “all patients” tells us that the (directives) articulate the basis for such judgments in the predominant concern is not about “tube feeding” per se, but following manner: about the benefit that tube feeding provides by satisfying basic physiologic needs (when in fact it does so). Indeed, The use of life-sustaining technology is judged in light of “medically assisted” nutrition and hydration is mentioned the Christian meaning of life, suffering and death. Only only as a qualifier. Yet, this directive recognizes that the in this way are two extremes avoided: on the one hand, value of satisfying such basic needs can be counterbalanced an insistence on useless or burdensome technology even by burdens associated with medical assistance, where the when a patient may legitimately forgo it and, on the directive says, “so long as this is of sufficient benefit to out- other hand, the withdrawal of technology with the weigh the burdens involved to the patient.” intention of causing death. (Part Five, Intro.). Implicit in this directive are a number of presuppositions While the explicit focus of this passage pertains to the use worth noting. First, the satisfaction of the physiologic need of life-sustaining technology, I would submit that the real for nutrition and hydration is always a benefit. In other concern is actually more about respecting the human digni- words, one cannot – consistent with the Catholic moral tra- ty of those near the end of life than it is about the use of dition – say that satisfying this need is never a benefit or of technology itself. In this sense, the directives are articulat- no benefit whatsoever. Yet, this directive also presupposes ing that old Aristotelian (and Thomistic) theory of virtue as that there may be times when “tube feeding” is medically the mean between two extremes, applied specifically to the contraindicated, either because the body can no longer question of how best to respect human dignity at that point assimilate it or because excessive clinical burdens may be in a person’s life when he or she is most vulnerable. associated with the tube. Accordingly, it is not always and necessarily the case that the benefit is sufficient to warrant In the remainder of this essay I will attempt to illustrate the its provision. In this way, Directive No. 58 leads us away significance of avoiding such extremes, by considering the from the two extremes of “never” and “always” and guides

*This article first appeared in Supportive Voice 13, no. 2, Fall, 2008. It is being reproduced with permission of the Supportive Care Coalition.

Copyright © 2009 CHA. Permission granted to CHA-member organizations and Saint Louis University to copy and distribute for educational purposes. 6 us toward that virtuous mean through which human digni- ferent formulas for feeding; and some types are appropriate ty can best be served. only for temporary use as a bridge therapy, while others are intended to be used permanently. For example, nasogastric Also, implicit in this directive is the presupposition that and nasointestinal tube feeding is intended only for short- there may be means other than tube feeding for providing term use because of discomfort and the risk of sinus block- nutrition and hydration. In many circumstances, hand age, infection and ulceration. feeding may be a scientifically sound option for patients who are unable to feed themselves but are still able to take Long-term or permanent feeding requires a percutaneous at least some nutrition and hydration orally. One of the endoscopic gastronomy tube (a PEG tube) that is placed downsides of tube feeding is that it reduces the interperson- surgically or laparoscopically, or the surgical placement of a al and social dimensions of the interaction between staff jejunostomy tube (J-tube).3 While these methods are more doing the feeding and vulnerable patients receiving the appropriate for long-term feeding because they deliver the nutrition and hydration. A significant advantage of hand nutrition and hydration directly to the stomach or intestin- feeding with respect to promoting human dignity is that it al tract, they too carry the real risk of clinical complica- can accomplish the same physiologic goal, while fostering a tions. Such complications may include surgical site irrita- more intimate and caring relationship — a human connec- tion, leaking or infection; diarrhea; nausea; vomiting; meta- tion — between the person doing the hand feeding and the bolic derangement; edema; aspiration pneumonia; lung patient.1 While tube feeding is often the most efficient way congestion or swelling of the brain.4 The rates of complica- to provide the daily caloric intake needed to sustain life, tions associated with long-term PEG and J-tubes range hand feeding provides the companionship needed to sustain from 32 percent to 70 percent.5 the human spirit and is more affirmative of the unique and incomparable worth of every human life. It is, of course, equally necessary to take into account the indications for tube feeding, the expected benefits and the Yet, tube feeding is often the preferred choice, even when outcomes. The use of a feeding tube is appropriate for a oral feeding is physiologically possible, for several reasons. wide variety of indications, including when a person has an For example, there may be state and/or institutional regula- esophageal obstruction, such as from head or neck cancer; tions regarding daily nutritional intake; limitations regard- an obstruction in the upper intestinal tract; difficulty swal- ing surrogate authority to discontinue medically assisted lowing due to a neurologic impairment resulting from nutrition and hydration; a limited number of staff or vol- stroke, coma, or a persistent vegetative state; or inadequate unteers to do hand feeding; and, in some states, greater nutritional intake due to dementia, severe illness or short reimbursement rates for nursing homes that care for tube- bowel syndrome. The expected benefits of tube feeding fed rather than hand-fed residents.2 Of course, many include better nutrition, improved skin integrity, increased patients are physically unable to take nutrition and hydra- comfort and less pain, satiation of hunger or thirst, im- tion orally. In such cases, a decision to initiate or continue proved quality of life, decreased risk of aspiration-related tube feeding must take account of the indications for its pneumonia, and prolonged life.6 use, the expected benefits, and the risks, complications and burdens. However, some studies show that the expectations of surrogates and families are much greater than the actual out- Basic Clinical Considerations comes related to these benefits, and that the incidence of Without going too deeply into the clinical details (and thus aspiration-related pneumonia, decubiti and functional sta- way beyond my area of expertise), there are some important tus are similar three months prior to the time tube feeding considerations that patients, families, surrogates, ethicists is initiated as they are three months after.7 Moreover, certain and staff need to keep in mind to ensure that the use of patient populations, such as those with advanced dementia, feeding tubes promotes human dignity. One such consider- end-stage cancer or certain metabolic disorders, or patients ation is the type of tube feeding that will be used. Different who naturally lose their appetite and thirst because they are types of tube feeding have distinct purposes and require dif- actively dying, may not experience some or any of these

Copyright © 2009 CHA. Permission granted to CHA-member organizations and Saint Louis University to copy and distribute for educational purposes. 7 benefits. Yet, the rate of feeding tubes in these patient pop- NOTES ulations remains high, partly due to the significance that 1. Regarding hand feeding versus tube feeding, see “Hand Feeding families and care providers attribute to tube feeding as a Delivers Compassionate Palliative Care,” Catholic Health World, 24, 8 8 (2008), May 1. symbol of their love and care. 2. Regarding these and other reasons for the use of tube feeding, even when it may not be the best clinical choice, see Gillick, MR, and Conclusion Volandes, AE, “The Standard of Caring: Why Do We Still Use A beginning assumption underlying this essay has been that Feeding Tubes in Patients with Advanced Dementia?” Journal of the American Medical Directors Association 9 (2008): 364-367. moral medicine is good medicine, and good medicine is 3. Regarding the different types of tube feeding, see Bowers S, “All moral medicine. Essentially, what this means is that if med- About Tubes: Your Guide to Enteral Feeding Devices,” Nursing 30, ical care is to respect and promote human dignity, it must 12 (2006):41-7. at a bare minimum be clinically sound. Accordingly, we 4. Metheny, NA, Meert, KL, and Clouse, RE, “Complications Related to Feeding Tube Placement,” Current Opinion in Gastroenterology 23 need to remind ourselves from time to time of the possibili- (2007): 178-182. ty that a benevolent but misplaced emphasis on the symbol 5. Cervo, FA, Bryan, L, and Farber, S, “To Peg or Not to Peg: A Review of our love might, in the particular case, actually interfere of Evidence for Placing Feeding Tubes in Advanced Dementia and the Decision-Making Process,” Geriatrics 61, 6 (2006): 30-35; and with respecting and promoting the dignity of those we love Sheehan, M, “Feeding Tubes: Sorting Out the issues,” Health Progress through the provision of clinically appropriate care. 82, 6 (2001): 22-27. Decision-making around the use of feeding tubes must take 6. Carey, TS, Hanson, L, Garrett, JM, et al. “Expectations and into account the clinical context of the circumstances in Outcomes of Gastric Feeding Tubes,” JAMA 119, 6 (2006):527.e11- 527.e16. which, and the purpose for which, it is being used. Such 7. Carey, “Expectations and Outcomes of Gastric Feeding Tubes,” decision-making should aim for that virtuous mean 527.e14. See also, Roche, V, “Percutaneous Endoscopic Gastrostomy: through which human dignity is best served: by providing Clinical Care of PEG Tubes in Older Adults,” Geriatrics 58, 11 care that avoids an insistence on useless or burdensome (2003): 22-29; and Finucane, T, Christmas, C, Travis, K, “Tube Feeding in Patients with Advanced Dementia: A Review of the means of maintaining life and also avoids the withdrawal of Evidence,” JAMA 282, 14 (1999): 1365-1370. such means with the intention of causing death (cf. 8. Gillick, “The Standard of Caring: Why Do We Still Use Feeding Directives, Part Five, Intro.). Tubes in Patients with Advanced Dementia?,” Journal of the American Medical Directors Association 9 (2008): 365-366. 9. Sheehan, “Feeding Tubes: Sorting Out the Issues,” Health Progress 82, As a final note, one might observe that this essay has scant- 6 (2001):22. ly mentioned the issue of tube feeding for patients in a persistent vegetative state. While this is an issue of tremendous significance insofar as it concerns how some of the most vulnerable members of society are treated, the ethical questions pertaining to tube feeding more generally are as great and varied as the circumstances and types of tube feeding. As Fr. Myles Sheehan, S.J., M.D. reminds us, the case of a person living in a persistent vegetative state is only one of many circumstances in which tube feeding is indicated, and one that is less common than others.9 Thus, in seeking the mean between extremes, we have a responsibility not to let the issues surrounding one fairly rare circumstance of tube feeding provide the paradigm in which we make decisions regarding tube feeding in all other circumstances.

Managing Abnormal Pregnancies Prior to Viability

uring Holy Week, a reporter interviews, the authors convey the result in the death of the unborn child” from the Washington Post impression that miscarriage manage- (emphasis added). Nothing is said here Dcontacted CHA to inquire ment is deficient in Catholic owned- about having to wait until there are no why Catholic hospitals do not perform hospitals because of the institution’s “fetal heart tones” before intervening. D&Cs. He claimed to have received a moral beliefs and its “right to refuse Nor does any other authoritative source call from a woman who said she had care as granted by ‘conscience clauses’” require this. In fact, Directive 47 makes been refused such at a Catholic hospi- (1778). no sense if clinicians must wait until tal in the Northeast. During the course the cessation of a fetal heartbeat. The of a conversation with Sr. Carol The authors make several misleading very point of the Directive is to allow Keehan, the reporter made mention of claims in the article. Among the more for an indirect abortion. It recognizes an article that seemed to support the concerning are the following: that medical interventions to address a woman’s claim. He later emailed the serious pathological condition of a preg- article to CHA. Catholic hospitals (i.e., ethics com- nant woman might indirectly cause the mittees) do not permit uterine evacu- death of the fetus. Directive 47 does The article in question (“When There’s ation so long as fetal heart sounds are not require that the fetus already be a Heartbeat: Miscarriage Management present. This seems to be the chief dead before intervening. Where this in Catholic-Owned Hospitals,” by Lori complaint. assumption comes from is not clear, but R. Freedman, Ph.D., Uta Landy, Ph.D., it is not from Church teaching and it and Jody Steinauer, MD, MAS) “Contradictory interpretations of should not be from ethics committees appeared in the October 2008 issue of Directive 47 in the Catholic health or ethics consultants in Catholic the American Journal of Public Health literature and in practice indicate that hospitals. (Vol. 98, no. 10, pp. 1774-78). It has ethics committees are either uncertain since been cited in a more recent article or in disagreement about how to The article in question refers to “the in the same journal and is summarized manage miscarriage when fetal heart manual used by Catholic-owned hospi- in the NEJM’s Journal Watch (14, no. 1, tones are present and what exact cir- tal ethics committees to interpret the January 2009: 5). cumstances allow for termination of directives …” (1775). One could easily pregnancy in Catholic-owned hospi- get the impression that it is this manual The authors interviewed six OB-GYNs tals” (1778). that prohibits any medical intervention “working with and within Catholic- if there are fetal heart tones. The manu- owned health institutions, each of Regarding the first claim, Directive 47 al that is being referred to is the one whom reported at least one … event” is the operative Directive when the fetus published by the National Catholic (1776) in which the physicians were has not reached viability. The Directive Bioethics Center (NCBC): Catholic barred “from completing emergency states: “Operations, treatments, and Health Care Ethics: A Manual for Ethics uterine evacuation while fetal heart medications that have as their direct Committees, edited by Peter Cataldo, tones were present, even when medical- purpose the cure of a proportionately Ph.D. and Albert Moraczewski, O.P., ly indicated” (1777). The physicians serious pathological condition of a preg- Ph.D. However, neither in the NCBC’s claimed that in these cases, “Catholic nant woman are permitted when they statement on their website on early doctrine interfered with their medical cannot be safely postponed until the induction of labor nor in the article on judgment” (1774). Based on these six unborn child is viable, even if they will “abnormal pregnancies” in the manual

Copyright © 2009 CHA. Permission granted to CHA-member organizations and Saint Louis University to copy and distribute for educational purposes. 9 (Chapter 10A, “Medical and Ethical The emotional difficulty for clinicians, membranes calls for expectant manage- Considerations Regarding Early Induc- however, when there are fetal heart ment, unless or until chorioamnionitis tion of Labor”) is there any mention of tones, should not be minimized. There supervenes. In this situation, there is not intervening so long as there is a is anecdotal evidence to suggest consid- virtually no chance of fetal survival and, fetal heartbeat. erable reluctance on the part of clini- because the mother’s life is in danger, cians to intervene when the fetus is still induction of labor may be morally justi- The website statement reads: “Early alive. Such reluctance is certainly under- fied under the conditions stated above induction of labor for chorioamnionitis, standable. In fact, one would have rea- in Directive 47 (10A/2). preeclampsia, and H.E.L.P. syndrome, son to be concerned were it not present. for example, can be morally licit under But the emotional reaction to these dif- This statement, which accurately the conditions just described because it ficult situations and decisions (i.e., the reflects Church teaching, rests on the directly cures a pathology by evacuating reluctance to intervene when fetal heart absence of condition 3 in the principle the infected membranes in the case of tones are present) is not the same as the of double effect, i.e., that the death of chorioamnionitis, or the diseased pla- Church’s teaching. The authors of the the fetus cannot be a means by which centa in the other cases, and cannot be article got it wrong. And it is quite like- the good effect is achieved. The absence safely postponed” (www.ncbcenter.org/ ly that a good number of the ethics of chorioamnionitis turns an indirect 04-03-11-EarlyInduction.asp). As the consults in response to abnormal preg- abortion into a direct abortion. statement suggests, this position rests nancies result from a tension between on the principle of double effect which what the Church (and Directive 47) Unfortunately, the article contrasts the is explained as follows: permits and the sensibilities of clini- position enunciated in the NCCB’s cians. manual with an article that appeared in Actions that might result in the Health Progress (Jean deBlois and Kevin death of a child are morally permit- The article makes another point, name- O’Rourke, “Care for the Beginning of ted only if all of the following condi- ly, that “uterine evacuation may not be Life: The Revised Ethical and Religious tions are met: (1) treatment is direct- approved during miscarriage by the hos- Directives Discuss Abortion, Contra- ly therapeutic in response to a seri- pital ethics committee if … the preg- ception, and Assisted Reproduction,” ous pathology of the mother or nant woman is not yet ill, in effect 76, no. 7 [September-October 1995]: child; (2) the good effect of curing delaying care until … the pregnant 36-40), characterizing the former as the disease is intended and the bad woman becomes ill, or the patient is “conservative” and the latter as “liberal.” effect foreseen but unintended; (3) transported to a non-Catholic owned What the authors of the article seem to the death of the child is not the facility” (1775), and quotes the ethics have missed in the deBlois/O’Rourke means by which the good effect is committee manual’s explanation: “The article is that the diagnosis in the case achieved; and (4) the good of curing mere rupture of membranes, without example is “’probable uterine infection the disease is proportionate to the infection, is not serious enough to sanc- and threatened abortion’” and they fail risk of the bad effect (ibid.). tion interventions that will lead to the to understand the subsequent explana- death of the child” (1775). The manual tion for why the intervention in this The article in the manual reiterates the goes on to say the following: case constitutes an indirect abortion. substance of this position and, again, there is no mention of fetal heart Chorioamnionitis endangers the life of In sum, the article in the American sounds. Ethics committees and ethics the mother and therefore constitutes a Journal of Public Health falsely charac- consultants should not be confused “proportionately serious pathological terizes the Church’s teaching on dealing about this if, in fact, there is confusion. condition.” Hence, in Catholic facili- with abnormal pregnancies as well as ties, preterm premature rupture of the general practice in Catholic hospi-

Copyright © 2009 CHA. Permission granted to CHA-member organizations and Saint Louis University to copy and distribute for educational purposes. 10 tals. While there may be occasional mis- When this is not possible, the direct The woman must have a proportion- understandings in practice or some vari- purpose of the intervention should be ately serious pathological condition. ability in the application of Directive to save the life of the woman and not The intervention that would indirect- 47 because of the complexity of clinical to terminate the life of the fetus. ly lead to fetal demise should be a last circumstances and the sensibilities of Hence, the intervention cannot be resort. clinicians, the guidance offered by the the direct cause of the death of the Directives is quite clear: fetus. This would constitute a direct — R.H. abortion which is never morally per- The goal of any medical intervention missible. However, the intervention For a very helpful article, see Edward R. Newton, MD, “Preterm Labor, Preterm is to save the lives of both the mother needed to address a serious pathologi- Premature Rupture of Membranes, and and the fetus to the extent that this is cal condition can be the indirect Chorioamnionitis,” Clinics in Perinatology 32 possible. cause of fetal demise. (2005): 571-600.

Key Clinical Considerations on Tube Feeding for Guiding Policy and Decision Makers in Catholic Health Care*

October 2008 a comprehensive, multi-disciplinary approach to under- Executive Summary standing how to bring relief of suffering to body, mind and spirit; n response to the Papal Allocution on March 25, 2004 helping patients live more fully in community. and the further clarification by the Congregation for Ithe Doctrine of the Faith’s Responsum about the care Coalition members work collaboratively to improve pallia- and feeding of patients in a persistent vegetative state, the tive and end-of-life care through education, program devel- United States Conference of Catholic Bishops (USCCB) is opment, networking, demonstration projects and advocacy. currently preparing to promulgate a new revision or update Clinical agreement exists that people should be given tube for the Ethical and Religious Directives for Catholic Health feeding when medically necessary for maintaining nutri- Care Services (Directives), Part Five, as it relates to feeding tional status and hydration, including for persons in the patients. Although we do not know what the revisions will acute phase of stroke or head injury. There is similar clinical be precisely, the Supportive Care Coalition would like to agreement that for terminal patients who are dying, feeding offer the following clinical considerations regarding med- tubes may be contraindicated due to risks and complica- ically-assisted feeding devices (“feeding tubes”) for guiding tions, such as persons with renal failure who are not on policy and decision makers who will be charged with the dialysis for whom feeding would cause fluid overload, and practical application of the newly revised Directives. respiratory distress.

Formed in 1994, the Supportive Care Coalition: Pursuing The Supportive Care Coalition adheres to the Catholic Excellence in Palliative Care, has grown to 19 member Moral Tradition, which proscribes inappropriate termina- organizations with Catholic health care facilities in 48 tion of treatment that is a proportionate means (i.e., states. The coalition focuses its activities on advancing pal- euthanasia) and acknowledges that under certain circum- liative care leading practices that address the continuum of stances persons can licitly forgo treatments that are a dis- living with life-limiting illness from time of diagnosis to proportionate means (i.e., excessively burdensome with no end of life. Building on our Catholic tradition of respect reasonable hope of benefit.) for life, human dignity and care for the poor and most vulnerable among us, we know that by working together and 1. What are feeding tubes? by sharing and creating proven practices we can enhance There are a variety of types of feeding tubes that provide palliative and end-of-life care. We are committed to: nutritional support and hydration for persons, for example, who cannot swallow. bringing about cultural change in the care of those with These tubes can be placed on a temporary or permanent chronic and life-threatening illness; basis. excellence in pain and symptom management; All types of feeding tubes are sometimes referred to as

* This document was prepared by a task force of the Supportive Care Coalition. It was initially shared with members of the coalition. Because of its value, we have asked permission of the Executive Director of the Coalition, Sr. Karin Dufault, if we could share the document with a broader audience.

Copyright © 2009 CHA. Permission granted to CHA-member organizations and Saint Louis University to copy and distribute for educational purposes. 12 “artificial nutrition and hydration” (ANH.) is permanent placement. • Nasogastric tube (i.e., through the nose, down the back The moral fallacy of the “technological imperative”—if of the throat and esophagus) we have it we must use it. • Parenterally through peripheral or central intravenous Difficult to discuss, especially since the Terri Schiavo case. lines (IV) Feeding is a symbol of caring—not feeding feels like • PEG tubes: (percutaneous endoscopic gastrostomy abandonment of the vulnerable. tubes) • Jejunostomy or J-tubes (i.e., below the stomach) 4. When (or for whom) may feeding tubes be • Hydration alone can be provided by subcutaneous infu- indicated (not exhaustive)? sion Support for patients who cannot swallow during the acute phase of neurological events like stroke or head 2. What are commonly perceived injury3 and patients receiving short term critical care.4 benefits of tube feeding? ANH may improve the nutritional status of patients with Common perceptions of benefits may, in fact, be inaccu- advanced cancer who are undergoing intensive radiation rate. therapy (e.g., obstructions due to head and neck cancer)5 Prevent aspiration pneumonia. or have proximal obstruction of the bowel (e.g., obstruc- Promote healing. tion in upper intestinal tract or bowel obstruction).6 • Improve nutritional status, which in turn is associated Use of parenteral ANH can prolong the lives of patients with reducing or preventing pressure ulcers and infec- with short bowel syndrome,7 and prolong the survival and tions, improving functional status, and prolonging life quality of life of patients with bulbar amyotrophic lateral • Prevent bedsores and other consequences of malnutri- sclerosis (i.e., Lou Gehrig’s Disease).8 tion. Supplement inadequate nutritional or fluid intake arising • Reduce incidence of post-surgical complications, infec- from severe illness or failure to thrive. tions, and length of stay Improve quality of life. 5. When (or for whom) are ANH contraindicated Prolong survival. because of the risks and complications Prevent suffering. (not exhaustive)? (These perceptions and misperceptions are addressed Sometimes ANH is used as a means of ease and conven- below.) ience because of the length of time it would require to spoon feed a patient. ANH can preserve life in some situa- 3. What is the psycho-social context tions, but in other situations, after placement, there is sub- of feeding tubes? stantial mortality related to underlying illness.9 Because ANH is commonly viewed as a simple way to feed patients, medical professionals and the wider public Examples of possible contraindications are: in the U.S. tend to overestimate the benefits for terminal- The inability to maintain nutrition though the oral route, ly ill patients.1 in the setting of a chronic life-limiting illness and declin- Fear of pain and suffering from starvation either by ing function, which is usually a marker of the dying patient, family, or staff lead to ANH use. process. Often times the patient is unable to make the decision. Most dying patients do not experience hunger or thirst.10 The reflex by families and clinicians to provide nutrition Dry mouth is a common problem with those who are for patients who cannot swallow is overwhelming. It is dying; however, there is no relation to hydration status now common for such patients to undergo a swallowing and the symptoms of dry mouth. evaluation and if the patient fails the test, then to move Numerous observational studies have demonstrated a forward with tube feeding placement.2 high incidence of aspiration pneumonia in those who The original purpose for which ANH was developed was have been fed by nasogastric tube.11 This is sometimes for temporary use but with greater frequency the purpose accompanied with vomiting.

Copyright © 2009 CHA. Permission granted to CHA-member organizations and Saint Louis University to copy and distribute for educational purposes. 13 The bulk of the available evidence suggests that ANH obligatory overall, under certain circumstances the provi- does not improve the survival rates of patients with sion of a feeding tube can nevertheless be disproportionate- dementia.12 Some studies suggest that ANH does not ly burdensome, especially for the dying, when it does not improve survival rates and in comparison to spoon feed- provide a reasonable hope of benefit or causes harm. For ing might shorten survival rates. In short, spoon feeding example, if someone is dying, feeding that person will not might be preferred to ANH in these circumstances. increase a reasonable hope of recovery or cure, and it may Patients with advanced dementia who receive ANH cause disproportionate harms including aspiration and through a gastrostomy tube are likely to be physically choking, surgical complication, confusion and discomfort restrained and at increased risk of aspiration pneumonia, from being restrained to stop the patient from extubating diarrhea, gastrointestinal discomfort and problems associ- him/herself. Or, especially invasive surgery for tube place- ated with patient removing the feeding tube. 13 ment and its associated risks, possible restraints and tubes When a patient’s renal function declines in the last days down the throat might constitute a grave burden in the of life, ANH may cause choking due to increased oral judgment of some patients under certain conditions. and pulmonary secretions, dyspnea (i.e., difficulty breath- ing) due to pulmonary edema,14 and abdominal discom- Tube feeding persons who are dying should be thought fort due to ascites (i.e., accumulation of fluid between tis- about along a continuum from simplest cases where there is sue and organs in the abdomen).15 broad moral agreement to the other end of the continuum For patients who are in the last stages of dying from with difficult cases where there is reasonable disagreement. cancer, treating them for nutritional needs can grow their The simplest cases are terminal patients who are known to tumors and might escalate the patients’pain and be dying and for whom feeding would cause observable suffering.16 physical burdens or harms, such as a person with renal fail- Increased risk of infection such as urinary tract, viral, ure where feeding by any manner can promote fluid over- gastrointestinal, and eye.17 load and respiratory distress. This case suggests that the Increased risk of pressure sores.18 general obligation to feed is not required in every case. ANH will also likely cause patients to produce more urine and stool and possible diarrhea.19 Clinicians, caregivers and others need to exercise caution Long-term placement of PEG tubes can also result in when speaking of the obligation to feed persons who have a swelling of the brain.20 serious life-threatening illness, especially terminal patients who are dying. A poor explanation of the church’s teaching 6. Clinicians and decision-makers, especially or a misapplication of the Ethical and Religious Directives palliative and end-of-life care specialists, need to be can lead to unfortunate consequences. informed and to educate themselves about Catholic moral teaching and the Directives in this matter. Poor explanations or misapplications can: All need to incorporate relevant clinical considerations into Provide further rationale for those who support physician their ethical decisions and vice versa. The Catholic Moral assisted suicide legislation (PAS); Tradition acknowledges that in some situations, forgoing of Give the wrong impression that Catholic hospitals will treatment would be morally permissible and in other situa- not honor a patient’s wishes about proportionate and dis- tions it would be morally impermissible (i.e., euthanasia). proportionate means; While every person is obligated to use ordinary means to Conflict with the Patient Self-Determination Act preserve his or her life, no person should be obligated to (PSDA); submit to a health care procedure that the person has Foster a public perception that Catholic hospitals are not judged, with a free and informed conscience, not to provide a good place for compassionate care, leading to some a reasonable hope of benefit without imposing excessive patients and families “losing faith” in Catholic health risks and burdens on the patient. The provision of food and care; water are, in principle, proportionate means even when Likely run counter to good medical practice as indicated delivered through a feeding tube. This means that while in the above statistics;

Copyright © 2009 CHA. Permission granted to CHA-member organizations and Saint Louis University to copy and distribute for educational purposes. 14 Lead to disinformation, which would likely hamper the 11. Finucane T Bynum J. “Use of tube feeding to prevent aspiration ability of Catholic health care ministries to collaborate pneumonia.” Lancet (1996) 348:1421-1424. Feinberg M et al., “Prandial aspiration and pneumonia in an elderly population fol- with other-than-Catholic entities in mergers. lowed over 3 years.” Dysphagia (1996) 11:104-109. N. Pick et al., “Pulmonaryaspiration in a long-term care setting: clinical and labo- The misuse of quotes from recent papal and Vatican state- ratory observations and an analysis of risk factors.” Journal of the ments, in particular, when taken out of context of the American Geriatrics Society (1996) 44:763-768. Langmore S. et al., “Predictors of aspiration pneumonia: how important is dyshpagia?” Catholic Moral Tradition, could have a serious harmful Dysphagia (1998) 13:69-81. Langmore S. et al., “Predictors of aspira- impact on the healing mission of the church. The tion pneumonia in nursing home residents.” Dyshpagia (2002) Supportive Care Coalitions offers this clinical background 17:1365-1370. Grunow J. et al., “Gastroesophagela reflux following percutaneous endoscopic gastrostomy in children.” Journal of on ANH and potential impact on the mission and ministry Pediatric Surgery (1989) 24:42-45. Cane, D, Vane, B Gotto S. of Catholic health care for the consideration of policy and “Reduction of lower esophageal sphincter pressure with Stamm gas- decision makers charged with the practical application of trostomy.” Journal of Pediatric Surgery (1987) 22:54-58. Cogen Ret the newly revised Directives. al., “Complications of Jejunostomy Tube Feeding in Nursing Facility Patients.” American Journal of Gastroenterology (1991) 86:1610-13. Lazarus B. et al., “Aspiration associated with long-term gastric versus jujunal feeding: a critical analysis of the literature.” Archives of Physical Medicine and Rehabilitation (1990) 71:46-53. Fox, K. et al., NOTES “Aspiration pneumonia following surgically placed feeding tubes.” American Journal of Surgery (1995) 170:465-466. 11. Carey T et al., “Expectations and Outcomes of Gastric Feeding 12. Gillick MR. Rethinking the role of tube feeding in patients with Tubes.” The American Journal of Medicine (June 2006) advanced dementia. NEJM (2000) 342:206-210. Finucane T, 119:527.e.12-e.16. Christmas C, Travis K. “Tube feeding in patients with advanced 12. Monteleoni C, Fast Facts and Concepts # 128; The Speech Pathologist dementia: a review of the evidence. JAMA (1999) 282:1365-1370. and Swallowing Studies at www.eperc.mcw.edu. Mitchell SL, Kiely DK, Lipsitz LA. “Does artificial enteral nutrition 13. Rapp RP, Young B, Twyman D, et al. “The favorable effect of early prolong the survival of institutionalized elders with chewing and parenteral feeding on survival in head-injured patients.” J Neurosurg swallowing problems?” J Gerontol A Biol Sci Med Sci (1983) 58:906-912. Wanklyn P, Cox N, Belfield P. “Outcome in (1998)53:M207-M213. Meier DE, Ahronheim JC, Morris J, patients who require a gastrostomy after stroke.” Age Ageing (1995) Baskin-Lyons S, Morrison RS. “High short-term mortality in hospi- 24:510-514. talized patients with advanced dementia: lack of benefit of tube feed- 14. Martin CM, Doig GS, Heyland DK, Morrison T, Sibbald WJ. ing.” Arch Intern Med (2001) 161:594-599. Post SG. Tube feeding “Multicentre, cluster-randomized clinical trial of algorithms for criti- and advanced progressive dementia. Hastings Cent Rep (2001) 31:36- cal-care enteral and parenteral therapy.” CMAJ (2004) 170:197-204. 42. 15. Lee JH, Machtay M, Unger LD, et al. “Prophylactic gastrostomy 13. Finucane T:1365-1370. Callahan CM, Haag KM, Weinberger M, et tubes in patients undergoing intensive irradiation for cancer of the al. “Outcomes of percutaneous endoscopic gastrostomy among older head and neck.” Arch Otolaryngol Head Neck Surg (1998) 124:871- adults in a community setting.” J Am Geriatr Soc (2000) 48:1048- 875. Daly JM, Hearne B, Dunaj J, et al. “Nutritional rehabilitation 1054. Ciocon JO, Silverstone FA, Graver LM, Foley CJ. “Tube feed- in patients with advanced head and neck cancer receiving radiation ings in elderly patients: indications, benefits, and complications”. therapy.” Am J Surg (1984) 148:514-520. Arch Intern Med (1988) 148:429-433. Odom SR, Barone JE, 16. Senkal M, Zumtobel V, Bauer KH, et al. “Outcome and cost-effec- Docimo S, Bull SM, Jorgensson D. “Emergency department visits by tiveness of perioperative enteral immunonutrition in patients under- demented patients with malfunctioning feeding tubes.” Surg Endosc going elective upper gastrointestinal tract surgery:a prospective ran- (2003) 17:651-653. domized study.” Arch Surg (1999) 134:1309-1316. 14. Koretz R, 536. Nixon D et al., 124. O. HyunSoo and S. WhaSook, 17. Scolapio JS, Fleming CR, Kelly D, Wick DM, Zinsmeister AR. 302. “Survival of home parenteral nutrition-treated patients: 20 years of 15. Casarett D, Kapo J, Caplan A. “Appropriate Use of Artificial experience at the Mayo Clinic.” Mayo Clin Proc (1999) 74:217-222. Nutrition and Hydration—Fundamental Principles and 18. Mazzini L, Corra T, Zaccala M, Mora G, Del Piano M, Galante M. Recommendations.” NEJM 2005:353:2607-12. “Percutaneous endoscopic gastrostomy and enteral nutrition in amy- 16. R McCann et al., 1774. Fainsinger R, Fast Fact and Concept #133: otrophic lateral sclerosis.” J Neurol (1995) 242:695-698. Miller RG. Non-oral Hydration in Palliative Care, at www.eperc.mcw.edu. Examining the evidence about treatment in ALS/MND.” 17. Finucane T et al., “Tube Feeding in Patients with Advanced Amyotroph Lateral Scler Other Motor Neuron Disord (2001) 2:3-7. Dementia: A Review of the Evidence.” JAMA (1999) 282:1365- 19. Hallenbeck J, “Fast Fact and Concept #010; Tube Feed or Not Tube 1370. Leibovitz, A. “Pathogenic Colonization of Oral Flora in Frail Feed?” at www.eperc.mcw.edu. Elderly Patients Fed by Nasogastric Tube or Percutaneous 10. Owen O. et al., “Ketosis of starvation.” Journal of Clinical Endogastric Tube.” Journal of Gerontology (2003):58 53. M. Endocrinology and Metabolism (1983):357-379. Key Clinical Keymling. “Technical aspects of enteral nutrition.” Gut (1994) Considerations on Tube Feeding Page 6 of 7 35:S77-S80. Fernandez-Crehuet N. et al., “Bacterial contamination

Copyright © 2009 CHA. Permission granted to CHA-member organizations and Saint Louis University to copy and distribute for educational purposes. 15 of enteral feeds as a possible risk of nosocomial infection.” Journal of Hospital Infection (1992) 21:111-120. Tsai,C. Bradley S. “A strepto- coccal bacteria associated with gastrostomy feeding tube infections in a long-term care facility.” Journal of the American Geriatrics Society (1992) 40:821-823. 18. Allman R. et al., “Pressure ulcer risk factors among hospitalized patients with activity limitation.” JAMA (1995) 273:865-870. Peck A. et al., “Long-term enteral feeding of aged demented nursing home patients.” Journal of the American Geriatric Society (1990) 38:1195-1198. Michocki R. Lamy P. “The problem of pressures sores in a nursing home population: statistical data.” Journal of the American Geriatric Society (1976) 24:323-328. Key Clinical Considerations on Tube Feeding Page 7 of 7 19. Mitchell S. et al., “The risk factors and impact on survival of feeding tube placement in nursing home residents with severe cognitive impairment.” Archives of Internal Medicine (1997) 157:327-332. 20. Metheny, NA, Meert, KL, and Clouse, RE, “Complications Related to Feeding Tube Placement,” Current Opinion in Gastroenterology (2007) 23:178-182.

Bibliography: Ethics Committees in Long-Term Care*

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Libow, L., E. Olson, R. Newfeld et.al. “Ethics Rounds at the Nursing Home. An Alternative to an Ethics Committee.” Journal of the American Geriatrics Society 40 (1992): 95-97.

*Prepared by Lori Ashmore, CHA intern.

African American Heart Attack illnesses have in maintaining affordable health system. Across the country, hos- Patients Are Disproportionately health insurance and paying for their pitals are taking financial hits. They are Likely To Be Admitted To High- health care. (Kaiser Family Foundation, seeing losses in the portfolios that they Mortality Hospitals Feb. 5, 2009) rely on for investment income. And African American heart attack victims with state governments continuing to who live in racially segregated areas are Finding a Way To Ask Doctors cut budgets and talk of health-care disproportionately likely to be admitted Tough Questions reform from Washington, industry to hospitals with higher-than-average Waiting to see his dermatologist about a executives are preparing for even leaner mortality rates, even when the hospital skin rash, John Barnett heard the doc- times. (The Wall Street Journal, April 13, closest to them has lower mortality tor sneeze loudly before he came into 2009) rates, according to a new study pub- the exam room. The Seattle-area retiree lished on March 3 on the Health Affairs says it took all his courage to ask, “Are Genetic Embryo Screening: Web site. The study suggests that elimi- you going to wash your hands before Questions Grow Along With nating health care disparities will likely you examine me?” Despite efforts by Number of Procedures require addressing the social factors that advocacy groups and others to empower According to a recent article featured in lead to segregation. Researchers looked patients, challenging a doctor or nurse the Chicago Tribune, both the number at hospital admissions of Medicare on whether they are correctly doing of families checking embryos for genet- enrollees for acute myocardial infarc- their jobs remains downright intimidat- ic defects and the number of conditions tions, or heart attacks, in 118 health ing. Signs and posters in hospitals urge being tested are growing rapidly around care markets over the period 2000-2005. us to “Speak Up” if we see a potential the world. Determining the ethical and They found that blacks were 35 percent medical error. More nurses wear but- regulatory guidelines for such screening more likely than whites to be admitted tons these days that say “Ask Me If I’ve is proving difficult. Testing that at first to hospitals classified as “high mortali- Washed My Hands.” But even the most focused on eliminating genetic defects ty,” in which relatively high percentages outspoken and assertive among us may certain to cause early suffering and of heart attack patients did not survive: suddenly turn meek when we are sick death has expanded to defects such as 45 percent of African American patients or vulnerable in a hospital, fearing that genetically linked breast and ovarian were admitted to such hospitals, as our treatment will suffer if we antago- cancer, which are not always fatal, hit compared to only 33 percent of white nize caregivers. (The Wall Street Journal, somewhat later in life and affect 50 - 85 patients. (Health Affairs, March 3, 2009) March 4, 2009) percent of those who carry the gene rather than 100 percent. A new study New Report Highlights Health Recession Now Hits by Johns Hopkins University Care System’s Financial Squeeze Jobs in Health Care researchers shows that, as of 2006, 65 on Cancer Patients Employment in health care, the only percent of about 200 U.S. clinics carry- Cancer patients can face severe chal- major industry outside the federal gov- ing out screening on embryos allowed lenges in paying for life-saving care – ernment still adding jobs, is succumb- parents to select the sex of the embryo running up large debts, filing for per- ing to the recession. In the latest sign, implanted, even if the child was their sonal bankruptcy and even delaying or the president of New York City Health first or they were not trying to create a forgoing potentially life-saving treat- & Hospitals Corp. wrote Friday, April family with a balanced number of girls ment – even when they have private 10 to community organizations as well and boys. That – and a recent scandal health insurance, according to a new as employees and unions at its 11 hos- in which a California-based genetics lab report by the Kaiser Family Foundation pitals and four nursing homes, saying advertised its ability (since disproved) to and the American Cancer Society. The the agency will lay off more workers select a baby’s eye and hair color – have report profiles 20 patients and illus- even after slashing 400 jobs last month. raised concerns among many Americans trates the potential difficulties people He blamed the job losses on state cuts about the genetic selection of embryos. diagnosed with cancer or other serious in Medicaid payments to the public- (Chicago Tribune, March 25, 2009)

Copyright © 2009 CHA. Permission granted to CHA-member organizations and Saint Louis University to copy and distribute for educational purposes. 18 Putting Muscle Behind Journal of Medicine, 1.5 percent of pitals provided additional information End-of-Life Wishes non-federal U.S. hospitals use a com- regarding executive compensation prac- Millions of Americans have living wills prehensive electronic health record tices. While the report does not reach that they think provide clear instruc- (EHR) system. This does not include specific conclusions about the appropri- tions to medical personnel about what Veterans hospitals, which have all ate community benefit standard, IRS should and should not be done if their adopted EHR systems. If Veterans hos- Director of Exempt Organizations lives hang in the balance and they can- pitals were included in the calculation, Louis Lerner indicated that he is “‘pret- not speak for themselves. Yet in case the combined total would be 2.9 per- ty happy’ that most hospitals used com- after case, study after study, it seems cent. Ashish Jha, lead author of the parability data when setting executive that these documents do not result in report, said, “7.6 percent of hospitals compensation.” The IRS further stated the desired end among patients in hos- have a ‘basic’ EHR that included capa- that “as discussion about the communi- pitals and nursing homes. Now a new bility to record and store physician and ty benefit standard continues, addition- study confirms that confusion about nursing notes” and that “10.9 percent al information will be available as more interpreting living wills prevails in pre- had a very basic system” that did not accurate and complete data on commu- hospital settings, as well. The study, include the above functions. Jha indi- nity benefit expenditures become avail- conducted among 150 emergency med- cated that data on the effectiveness of able through Schedule H of the Form ical technicians and paramedics by a the technologies and other forms of 990.” This data is not expected to be team at Hamot Medical Center in Erie, data sharing were unavailable, stating released until late 2009. (BNA Health Pa., and published in February in The that “just because they have these sys- Law Reporter, Feb. 19, 2009.) Journal of Emergency Medicine, found tems doesn’t mean they are sharing that that concern for patient safety can col- information with other doctors or hos- Collaborative Proposes Rules lide with confusion about the intent of pitals down the street.” Contributing Engine for Interstate Transfer of living wills and do-not-resuscitate author, David Blumenthial, named by Electronic Health Information orders. (The New York Times, Feb. 24, President Obama as national coordina- The federally sponsored Interstate 2009) tor for health information technology, Disclosure and Patient Consent said, “IT [information technology] is Requirement Collaborative, part of the one important and ultimately critical Health Information Security and Privacy N.B. way to [support behavior change].” Collaboration (HISPC), recommended Students from the Center for Health (Joseph Conn, Modern Healthcare, the creation of a engine to facilitate effi- Law Studies at Saint Louis University March 25,2009) cient exchange of electronic health School of Law contributed the fol- information among states. The engine lowing items to this column. Amy Details of Executive Compensation will help address obstacles posed by dis- N. Sanders, Assistant Director, Practices Released in IRS Tax parate statutory and regulatory provi- Center for Health Law Studies, Exempt Hospital Report. sions governing the release of patient supervised the contributions of In 2006, the IRS began a study about health records across state lines. It will health law students Meghan executive compensation in the country’s operate via a set of software components McNally (JD anticipated ’10) and non-profit hospitals. The final report, to analyze a transfer request and ascer- Phillip Terrell (JD/MHA anticipated IRS Exempt Organizations (TE/GE) tain which privacy and consent laws ’11). Hospital Compliance Project Final apply thereto. Progress is currently ham- Report, released in Feb. 2009 indicated pered by uncertainty and confusion Comprehensive EHR System Used in most cases “hospitals are following regarding differences between state con- By 1.5 Percent of Hospitals. applicable laws and regulations in set- sent and privacy. (Government Health According to a report funded by the ting executive pay.” The report was IT, March 5, 2009) U.S. Department of Health and based on responses from over 500 non- Human Services in The New England profit hospitals. Twenty nonprofit hos-

Copyright © 2009 CHA. Permission granted to CHA-member organizations and Saint Louis University to copy and distribute for educational purposes. 19 Physicians Pressure Medical Health and Human Services CMS Releases 2010 Medicare Associations To Limit Drug Announces Members of Advantage Reimbursement Rates Industry-Sponsored Funding Comparative-Effectiveness Panel The Centers for Medicare and An article in the March 31 Journal of The Department of Health and Human Medicaid Services (CMS) announced the American Medical Association by Services (HHS) recently announced on April 6 its Medicare Advantage leading doctors and researchers calls for members of the new Federal Coordi- reimbursement schedule for next year. the nation’s specialty medical associa- ating Council for Comparative Effec- Private administrators of Medicare tions to start refusing general budgetary tiveness Research (Council), part of the Advantage plans will see a 4-4.5 percent support from drug and device manufac- Obama administration’s health care cut in reimbursement beginning in turers. Expressed as non-binding rec- reform initiatives. Council member, 2010, in accordance with the new ommendations, the appeal suggests that Carolyn Clancy, MD, director of the administration’s efforts to curtail higher associations eliminate industry-based Agency for Healthcare Research and expense associated with Medicare man- sponsorships from almost all areas of Quality, explained that HHS will seek aged care beneficiaries (whose coverage activity except general advertising with- recommendations concerning different has cost on average 14 percent more in publications and booths at trade fairs treatment options, which will later be than traditional Medicare benefits). The and physician conferences. “What I presented to patients and doctors alike move caught managed care plan firms don’t like is when I can’t tell if what I’m as they make health care choices. This by surprise as cuts in government reim- hearing is science, or marketing in the research will take place at AHRQ, the bursement were not anticipated until guise of science,” said lead author National Institutes of Health and HHS 2011. Many plan administrators foresee David J. Rothman, professor at through funding from the recent stimu- modifications of cost-sharing arrange- Columbia University in New York. lus bill. Other panel members include ments resulting in significant increases Opponents to the recommended representatives from the Substance in monthly premiums. Republicans in restrictions – which previously extended Abuse and Mental Health Services Congress balked at the CMS move, to full-fledged branding on conference Administration, the Food and Drug especially since it is being implemented name tags and physician fellowship sup- Administration, the Office of Minority alongside a cut in physician reimburse- port – find that the guidelines could Health, the Centers for Disease Control ment that Congress is likely to halt later inhibit information received by doctors. and Prevention, and the HIV/AIDS this year. (The Wall Street Journal, April Marjorie Powell, senior assistant general Bureau at the Health Resources and 7, 2009) counsel for the Pharmaceutical Research Services Administration, among many and Manufacturers of America, said others. (Modern Healthcare, March 19, “Physicians are making decisions based 2009) on their scientific and medical knowl- edge and training.” (The Wall Street Journal, April 1, 2009)

Copyright © 2009 CHA. Permission granted to CHA-member organizations and Saint Louis University to copy and distribute for educational purposes. 20 Editorial Advisory Committee HealthCare EthicsUSA Philip Boyle, Ph.D., STL, Catholic Health East Bridget Carney, Ph.D., RN, PeaceHealth Health Care Ethics USA © 2009 is published quarterly by the Catholic Health Rev. Thomas Kopfensteiner, STD, Catholic Health Initiatives Association of the United States (CHA) and the Center for Health Care Ethics Rev. Thomas Nairn, OFM, Ph.D., CHA (CHCE) at Saint Louis University. Senior Director, Ethics Daniel O’Brien, Ph.D., Ascension Health Subscriptions to Health Care Ethics USA are free to CHA members. There is a Michael Panicola, Ph.D., SSM Health Care nominal subscription fee for non-CHA members. To begin receiving this publi- cation, or to inquire about non-member rates, please contact Ellen Horan at [email protected]. Executive editor: Ron Hamel, Ph.D., CHA senior director of ethics

Associate editors: James DuBois, Ph.D., D.Sc., CHCE associate professor, 4455 Woodson Road department chair, and center director; Michele K. Langowski, MA, JD, Saint St. Louis, MO 63134-3797 314-427-2500 Louis University; and Sr. Patricia Talone, RSM, Ph.D., CHA vice president of www.chausa.org mission services Managing editor: Ellen B. Horan, CHA communications manager Center for Health Care Ethics 221 North Grand Blvd. St. Louis, MO 63103-2006 314-977-6661 GOT SOMETHING TO SAY? chce.slu.edu Send all Readers’ Forum comments to [email protected].

New from CHA! Free Online Learning Resource for ERDs CHA’s new online learning resource provides a conveni- ent, accessible way for CHA members to learn about the ERDs that’s perfect for individual or group learning. Interactive module features videos with ministry leaders, case studies, reflection questions and online instruction. Caters to busy schedules — You may participate in one sitting or in stages as time permits. Designed for physicians, nurses, senior executives, mission leaders, ethicists, pastoral care staff, ethics committees — everyone in Catholic health care who needs to understand the Directives and how to apply them. Visit www.chausa.org/learning. Note: CHA member website access is required.