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The American Journal of Bioethics Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/uajb20

The Role of Patient Comfort and “Comfort Measures Only” in Organ Donation after Cardiac Death (DCD) After a Stroke a

Marc Tunzi & Jeffrey P. Spike a

b

Natividad Medical Center

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University of Texas , Houston Published online: 14 Jan 2014.

Click for updates To cite this article: Marc Tunzi & Jeffrey P. Spike (2014) The Role of Patient Comfort and “Comfort Measures Only” in Organ Donation after Cardiac Death (DCD) After a Stroke, The American Journal of Bioethics, 14:1, 39-41, DOI: 10.1080/15265161.2014.862406 To link to this article: http://dx.doi.org/10.1080/15265161.2014.862406

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The American Journal of Bioethics, 14(1): 39–41, 2014 c Taylor & Francis Group, LLC Copyright  ISSN: 1526-5161 print / 1536-0075 online DOI: 10.1080/15265161.2014.862406

Case Commentary

The Role of Patient Comfort and “Comfort Measures Only” in Organ Donation after Cardiac Death (DCD) After a Stroke Downloaded by [Seton Hall University] at 13:11 06 April 2015

Marc Tunzi, Natividad Medical Center Jeffrey P. Spike, University of Texas, Houston This case is in some ways unique, and in other ways very typical of ethics consults. No matter how many consults one has been involved with, new cases always pose new questions. This case is unique in raising the issue of whether bed position is a life-sustaining treatment that may be refused, or a necessary comfort measure that must continue. The case is typical, however, in that it raises many issues that can be tackled one at a time and then reassembled to lead to a practical recommendation. Were we to have been involved in the case, these are some of the issues we would have addressed before arriving at a conclusion. Comfort is the first issue raised, and most likely the one that caused the most concern on the part of the staff. As the case description implies, being kept in a sitting position can help with controlling secretions, and thus improve comfort—at least of conscious patients. This patient is unconscious, however, and therefore is most likely unable to feel comfort or discomfort. If there is any legitimate reason to be concerned about his comfort, then the providers must address the concern. However, even if comfort were an issue, laying the patient flat might still be an option if medications such as proton pump inhibitors to decrease stomach acid production and anticholinergic agent to decrease pulmonary secretions could be used in order to maintain comfort. The ethicist ought to address this issue in his or her note, acknowledge the concern, and offer an answer. In this case, a pharmacological intervention to control the secretions might be indicated, and suffice to allay the concern. In addition to the specific question about bed position and comfort, this case is a reminder that there are broader questions about how to clinically assess comfort and discomfort in patients that appear to be unconscious and/or noncommunicative. How does staff assess pain in patients who are comatose or in a persistent vegetative state? What

is the evidence behind such assessments? How should we respond when some staff member appears unrealistically worried when there is no evidence of consciousness, and others seem too willing to ignore normal human compassion when they see what others (staff or family) take to be signs of suffering? What is the right balance of science and humanism? If the patient’s comfort has been addressed, then it is ethically and legally permissible to withdraw a life-sustaining treatment if that is what the patient would want. While some state laws require “clear and convincing evidence” of the patient’s wishes, they do not usually spell out what that means. Here then is what we would suggest should count as sufficient to meet the “clear and convincing” evidence standard: Three daughters, one son, and an ex-spouse all agree that is what he would want. Let us be honest: The death of a family member is an emotionally difficult time, and often brings out long-simmering differences among family members. That none has emerged is remarkable—and strong evidence that no one is misrepresenting his wishes. In effect, each is a check on the others. And when they agree, each provides emotional support for the group (Tilden et al. 1995). Given that positioning the bed would improve the chances of a successful organ recovery, then the remaining question is, how important is organ donation to them? As long as they were the ones to raise the issue, and all agree he would want this, we can see no reason to try to override their wishes. A few simple questions to the family about what wishes he expressed about organ donations would suffice, starting with whether he has signed any donation card (e.g., with his driver’s license). If not, what do they recall him saying about it? It is only right for the ethics consultant to assure himself that the family understands that the patient is not “brain

Address correspondence to Marc Tunzi, Natividad Medical Center, Family Medicine Residency, 1441 Constitution Blvd, Salinas, CA 93906, USA. E-mail: [email protected]

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The American Journal of Bioethics

dead” (more properly, has not been declared dead by neurological criteria), and while the protocol being considered is widely considered ethical and legal, it is not universally accepted. The purpose of this discussion is not to create guilt or sow seeds of doubt, but to help ascertain whether this is what the patient would want. According to the American Thoracic Society position paper on DCD, “Ante mortem interventions are ethically appropriate if they contribute to a good transplant and have a low chance of harming the prospective donor” (Gries et al. 2013). The question is, who defines and who decides these interventions? What is the relative weight of the priority of organ donation versus comfort care in guiding end-of-life care? The case also raises the hypothetical question of how to proceed in cases where there is no donor card and the family does not all agree. In the absence of a clearly written advance directive, does the clinical ethics community agree that surrogate decision makers have the right to make this decision? If the first person on the surrogate list agrees, is that sufficient? Or do we want to restrict DCD to cases that leave no doubt as to the patient’s wishes, or at least all members of the surrogate list agree? These are important questions, though not for this case. Some people on the team might still feel that laying the patient flat is providing less care than is optimal, simply in order to achieve the organ donation. This is best addressed directly with the staff. This case brings out the very important fact that many (at some institutions, most) consults are called by nursing staff, and the value of the consult is as much to help the staff as to help the patient. It is possible that many of the staff members who felt that it was unacceptable to lay the patient flat were concerned about the intent of doing so, rather than his comfort. This raises the broader question, what does one call an act that has the primary intent of allowing someone to die sooner from their underlying disease process in order “to get good organs” (Spike 2000a; 2000b)? Most clinical staff members are not ethicists, but most are sometimes troubled by questions of why they do or do not do specific things to the patients they care for. Even if questions of intent seem too diffuse, this is an area that affects staff morale greatly. It was the staff that asked for the consultation in this case. Part of the consult process then might be to meet with the staff and seek areas of agreement: stress that we too feel strongly that the good of patient should precede consideration of the “good of the organs.” We could ask the neurologist and neurosurgeon about the possibility of additional interventions and their opinions regarding overall prognosis. Is there truly nothing more to do to prevent this medulla herniation? What does “very poor neurologic prognosis” mean and on what is it based? It is worth asking these questions, and sharing it with the staff. In the discussion, we could also share that there are the cases where steroids are withdrawn to allow the process of herniation to lead to the death of a patient. In those cases we have chosen to withdraw an intervention that was, to use common parlance,

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seen by the proper decision makers as only prolonging the dying process. However, these questions should not be pursued in a way that lays a “guilt trip” on the family. In cases like this, optimal care does not have to mean keeping the patient alive as long as possible. Optimal care is a value judgment, and only valid if it is the patient’s value judgment, and/or the family’s, not the care team’s. For this reason, we do not like the euphemism of “optimal care team” for an ethics consultation service; it may appear to imply an objective “best interest standard,” inviting a paternalistic rather than patient-centered approach. If the patient would feel it was terrible to lose the opportunity to have his death lead to some greater good, then we ought to try (out of respect for the patient) to enable his “last wish” to be achieved. This can contribute to the satisfaction of the family members, and their ability to deal with the grief of the loss without self-doubt or regret (Gries et al. 2008; Hickman et al. 2012). Like traditional donation by neurological criteria, DCD can be the difference between saving the lives of three or more people on transplant lists and having them die while waiting. Families can feel justly proud when they can say of a loved one’s death that at least he was able to save the lives of other people (Spital and Jacobs 2007). As one author said about other causes that can lead to a failure to donate: “Family members may experience disappointment when tests reveal preexisting medical problems that preclude their loved one from becoming a donor. This disappointment may add to their anguish and leave them feeling robbed of the opportunity to bring something of value from their tragic loss” (Holtkamp 2001). We recognize that DCD itself is still a controversial process. The case could be used to raise the broader question of the overall utility of DCD. A recent review by researchers in Australia notes that “a national policy focus on DCD may lead to an overall reduction in the number of transplants performed.” Raising this topic is beyond the role of clinical ethics consultants involved in a case who are usually expected to deliver a consult note within 24 hours; it may be worth addressing at a policy or community level (Benforf et al. 2013). However, once the policy has been in place at a hospital and a number of cases have occurred, most staff will become more comfortable with it. But we do not wish to imply that everyone will accept it. Perhaps some staff members will choose something like a “conscience objection” and not participate in these cases. If the use of the protocol becomes more common and the disagreement persists, then some staff members might decide not to work in the intensive care unit (ICU) any longer. It is important to acknowledge their feelings. But we also believe a patient’s and family’s wishes are ethically prior. Thus, to respect these wishes, we would support DCD in such cases. This case also raises two issues that are extremely common, and rarely addressed. First, the case raises the issue of whether an ex-spouse should have any role in the decision making. It would be hard to imagine a more pure example of the difference between law and ethics: Clearly, the law

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Clinical Ethics

says all rights and privileges of marriage have ended. But equally clearly, this is not one of the “privileges” that make people want to marry each other. In our experience, it is not uncommon for “exes” to be involved in decision making. Ethicists are often in a position to decide how much to involve exes, and—especially when there is no one else, and the ex gives every reason to believe they are interested in doing what is best—we often do rely on them. In so doing, we let them do an important service for the patient. In the most poignant cases, exes also become the primary caregivers. They will often say things to the effect that “I still care about him, and don’t want to see him abandoned. We had a bad relationship, we were not meant to live together, but I still feel responsible somehow.” Many years may have passed since an acrimonious divorce, and what might have seemed like unforgiveable differences have mellowed in memory into forgivable human foibles. These are exactly the kinds of stories ethicists need to listen to, and not decide hastily or harshly by a legal document. Another issue raised by the case that is all too realistic is the claim that there was an advance directive, but no one knows how to find it. Ethicists must make sure there is a good-faith effort to track it down. The first place to call would be the patient’s primary care physician. It is unfortunate how often no one at a hospital calls the patient’s doctor. This may be the most common and most egregious type of failure of continuity of care. Even if the doctor does not have a copy of the advance directive, she might have had a discussion with the patient about advance care planning, organ donation, surrogate decision making, and so on. 

January, Volume 14, Number 1, 2014

REFERENCES Benforf, A, et al. 2013. An international comparison of the effect of policy shifts to organ donation following cardiopulmonary death (DCD) on donation rates after brain death and transplantation rates. PLoS One 8: 1–7. Gries, C. J., et al. 2008. Family member satisfaction with end-of-life decision making in the ICU. Chest 133: 704–712. Gries, C. J., et al. 2013. An official American thoracic society/international society for heart of lung transplantation/society of critical care medicine/association of organ and procurement organization/united network of organ sharing statement: Ethical and policy considerations in organ donation after circulatory determination of death. American Journal of Respiratory Critical Care Medicine 188: 103–109. Hickman, R. L., Jr., et al. 2012. Decisional conflict and regret: Consequences of surrogate decision making for the chronically critically ill. Applied Nursing Research 25: 271–275. Holtkamp, S. 2001. Wrapped in mourning: The gift of life and organ donor family trauma, 43. New York, NY: Brunner-Rutledge. Spike, J. P. 2000a. Controlled NHBD protocol for a fully conscious person: When death is intended as an end in itself and it has its own end. Journal of Clinical Ethics 11(1): 72–76. Spike, J. P. 2000b. The limits of persuasion. Journal of Clinical Ethics 11(1): 92–93. Spital, A., and C. L. Jacobs. 2007. The beauty of the gift: The wonder of living organ donation. Clinical Transplantation 21: 435–440. Tilden, V., et al. 1995. Decisions about life-sustaining treatment: Impact on physicians’ behaviors on the family. Archives of Internal Medicine 155: 633–638.

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The role of patient comfort and "comfort measures only" in organ donation after cardiac death (DCD) after a stroke.

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