Health Care Law Mid-Atlantic Ethics Committee Newsletter

University of Maryland Francis King Carey School of Law Year 2017

Mid-Atlantic Ethics Committee Newsletter, Winter 2017

This paper is posted at DigitalCommons@UM Carey Law. http://digitalcommons.law.umaryland.edu/maecnewsletter/72 MID-ATLANTIC ETHICS COMMITTEE NEWSLETTER

A Newsletter for Ethics Committee Members in Maryland, The District of Columbia and Virginia Published by the Law & Health Care Program, University of Maryland Francis King Carey School of Law and the Maryland Health Care Ethics Committee Network WINTER 2017

Inside this issue . . . ETHICS OF CARING FOR TRANSGENDER Ethics of Caring for Transgender PERSONS Persons ...... 1 Clinicians and ethics consultants may encounter questions regarding the treatment of transgender persons in many medical contexts. Providers may feel less confident Organ Donation and when trying to help transgender persons because they do not know enough about their Transplantation: Ethics, foremost needs and wants. Religion, & Interprofessional In this piece I discuss some key considerations for providers to best help these Collaboration ...... 5 persons. This includes understanding the right words to use, common critical needs, and the importance of advocacy. Focus on Organ Procurement Strategies ...... 7 Overriding concerns for most transgender persons are two basic desires: the ability to live authentically and to have others respond to them on the basis of who they are 1 Case Presentation...... 9 as opposed to how they may look. These concerns underlie many of the guidelines I Comments from a Speech- outline below. Language Pathologist ...... 9 Alternative Treatment I. Using the Right Words Consents ...... 12 Comments from a Hospital Providers should use Ethics Consultant ...... 13 the most respectful words to describe transgender Calendar of Events...... 15 persons—the words requested by transgender individuals themselves. It is particularly important that providers of transgender persons see them The Mid-Atlantic Ethics Committee as the gender they are, i.e., the gender that they identify with. Newsletter is a publication of the Finding the right words here may be difficult: “Trans is a very new term … [It] is Maryland Health Care Ethics meant to be a new umbrella term to represent all atypical genders. … Cis is a word Committee Network, an initiative of used to describe the opposite of trans.”2 the University of Maryland Francis First, providers should not refer to transgender persons as “patients.” I have thus far King Carey School of Law’s Law & intentionally used the word “person” instead of “patient.” This is because changing Health Care Program. The Newsletter or wanting to change one’s gender is not a disorder. Trans people may have disorders. combines educational articles with Being trans, however, is not a disorder. There is a distinction between transgender timely information about bioethics identity and dysphoria. Gender dysphoria is discomfort or distress caused by a activities. Each issue includes a feature discrepancy between an individual’s gender identity and the gender assigned at birth. article, a Calendar of upcoming Some trans people have gender dysphoria but not all. It is a mistake then for providers events, and a case presentation and to refer to these people as “patients” since they may not have a disorder. Further, to commentary by local experts in refer to them as patients when they may not have a disorder is implicitly stigmatizing. bioethics, law, medicine, nursing, or related disciplines. Some individuals may have symptoms, such as depression, that meet the criteria for a disorder. If this occurs, they should of course be diagnosed and treated. Depression Diane E. Hoffmann, JD, MS - Editor or anxiety, however, may be caused by living in a body that does not reflect their vision of themselves. Thus, their feelings of depression may change after they change © 2017 University of Maryland Francis King Carey School of Law Cont. on page 2 Ethics of Caring for Transgender Persons Cont. from page 1 The Mid-Atlantic Ethics their bodily characteristics. are now creating these all-genders Committee Newsletter is published three times per year by I recall one late adolescent male who restrooms. This is optimal as it the Maryland Health Care Ethics had, according to both his parents and demonstrates the most respect for Committee Network himself, felt depressed his entire life trans identities, especially trans people Law & Health Care Program since early childhood. Once he had who are non-binary (i.e., they do not University of Maryland surgery to remove his tissue, identify as either men or women). Francis King Carey School of Law however, he reported feeling happy for This third bathroom may, though, 500 West Baltimore Street the first time, virtually overnight. be suboptimal if some transgender Baltimore, MD 21201 persons are fearful of revealing their 410-706-7191 Providers should also use the right transgender identity by entering the pronouns. Providers should not Diane E. Hoffmann, JD, MS, Editor bathroom. choose pronouns for a person, but Anita J. Tarzian, PhD, RN, Some may assert that this concern is Co-Editor should simply ask the person, “What pronouns would you like me to use not problematic because transgender Contributing Editors: for you?” Transgender persons want persons should be as proud of who Joseph A. Carrese, MD, MPH their providers to know their gender they are as anyone else. While true, Professor of Medicine this assertion fails to take into account Johns Hopkins University and how they want to be addressed. Providers should use the pronouns important subjective differences, Brian H. Childs, PhD people request, even if the provider as well as the increased likelihood Community Professor of Bioethics, is unfamiliar with that pronoun. In of harassment and violence against Mercer University School of transgender people. For bathrooms, Medicine, Savannah, GA addition, it is important for providers to call these individuals by the correct as for all considerations, providers Evan DeRenzo, PhD first name, regardless of whether that should take into account the full range Ethics Consultant name is reflected on legal documents. of individual experiences. Some Center for Ethics transgender persons may not feel Washington Hospital Center Some providers believe that these persons should have to take the sufficiently confident in their status Edmund G. Howe, MD, JD initiative to tell the provider if they to let others know about it or may be Professor of Psychiatry, would like their providers to call unwilling to face the increased risk of U.S.U.H.S. Department of harm. Providers should thus adjust to Psychiatry them a name that corresponds with their gender. This view, however, what these persons individually need Laurie Lyckholm, MD is not ethically optimal because it rather than over-generalize based on Asstistant Professor of Internal all transgender persons. Medicine and Professor of discriminates against transgender Bioethics and Humanities, persons less willing to take this Transgender persons’ sexual Virginia Commonwealth initiative. Thus, it may be better for orientation—which indicates the School of Medicine providers not knowing how to refer to partners to whom they feel sexually Jack Schwartz, JD these individuals to take the initiative attracted—likewise, lies along a Adjunct Faculty and ask them. spectrum. Regardless of gender University of Maryland identity, persons may be attracted to Francis King Carey School of others of the same or the opposite Law II. Respecting Transgender Persons’ gender or both, and this may change Individual Needs Henry Silverman, MD, MA over time. The sexual feelings a Professor of Medicine Attempting to use the right words person experiences may also change if University of Maryland is just one of many ways that they take . Some trans men providers should attend to transgender may experience increased aggression Comments to: persons’ individual needs. Another or agitation due to testosterone and [email protected] consideration is the much publicized the libido of some trans women The information in this newsletter concern regarding bathroom use. taking estrogen may decrease.3 If is not intended to provide legal I recall meeting years ago with a trans women have bottom surgery, advice or opinion and should not be LGBT group of professionals. One of afterward they may have to continue acted upon without consulting an its transgender members suggested to dilate their vaginas. Providers can attorney. that, when feasible, there should be benefit transgender persons by sharing three bathrooms instead of two, one this knowledge with the transgender for men, one for women and one for persons in their care. All too often, 2 Mid-Atlantic Ethics Committee Newsletter people of all genders. Some places transgender persons report knowing more about their medical realities than who are not mental health specialists, could refer the evaluation to others the providers. Justifiably, transgender such as endocrinologists, want and/or advocate for the trans person persons want their providers to inform psychological consultation prior to by telling the insurance company that them rather than the reverse. prescribing medications. While this such evaluations are discriminatory. in itself may be ethically questionable Alternatively, transgender persons in that it is highly paternalistic, it and their therapists may agree on III. Advocating for Transgender may also raise ethical conflicts for the objective criteria to decide whether to Persons therapist and the trans person. This recommend surgery. They may agree Gender identity may differ is the case when, for example, an in advance, for instance, on a length profoundly from one person to the endocrinologist asks for a psychiatric of time that the transgender person next and may cause differences in or psychological consult and a mental should live openly in the gender transgender persons’ bodily goals. health provider has already been they seek as a trial to help determine These differences are best understood seeing the trans person for therapy to whether this person still wants, as lying along a spectrum. Thus, some support gender confirmation surgery and thus should have, the desired persons may not want any bodily or other related interventions. If the intervention. changes or may want only some of the trans person knows that the provider In other instances, providers may bodily interventions available. Some they are seeing for therapy may have also need to specifically advocate for may want to stop after only having to make a recommendation regarding transgender persons. For example, taken hormones or after top, but not an intervention in the future, the trans trans men may want contouring bottom, surgery. Some may want all person may be faced with having to surgery to achieve visual traits possible bodily changes. Providers choose between sharing their genuine consistent with being male, which should understand and respect this. feelings during therapy and taking can help avoid unwanted attention.4 Further, some may differ in what the risk that this will not maximize Likewise, trans women may want they want providers to know. Some the likelihood that the therapist will breast augmentation in addition to transgender individuals may not want recommend what the trans person estrogen.5 Providers should support to disclose their transgender identity to wants and sharing what they believe these interventions. Providers, their providers if their medical needs will maximize the likelihood that the more than others, should know do not require it. Physicians may be therapist will approve the intervention. how exceptionally important these most accustomed to expecting that The therapist may be in the position additional interventions may be to patients will be open to disclosing of either supporting his/her client by transgender persons. most private aspects of themselves. advocating what his or her client most wants or being an objective evaluator Adults rarely change their minds For transgender persons, however, this after making bodily changes to is not necessarily the case. of what the therapist believes is best for the client. If the therapist takes affirm their identities but children In addition to having the freedom this latter approach, he or she is acting may be different. The most difficult to be wholly themselves, transgender on his or her own view as opposed to decision for providers may be when persons also may need and want to respecting the autonomy of the trans and whether to advocate for early appear in a way that helps others person. This may harm the patient/ adolescents or even children who want respond to their identities, not their therapist relationship. Accordingly, hormones or surgery to bring about given physiology. Thus, some may transgender persons and their the body changes they want. Children benefit from different kinds of medical therapists should discuss potential may want medications to prevent interventions that help change their conflicts. or delay that causes certain appearance. For example, some trans changes. Children and adolescents women change their voice if they These evaluations may be who want to change their bodies may feel it is too deep and eliminate facial unwarranted. They may also more commonly change their minds. beard growth. discriminate against trans persons in For example, recognized experts that other persons seeking treatments Transgender persons may need Drescher and Pula report that, “as in comparable contexts are not the World Professional Association providers to act as their advocates in required to undergo such evaluations. the pursuit of bodily interventions. for Transgender Health . . . notes in Therapists should then ask this its latest Standards of Care, gender This may be especially true where question: By offering an opinion, are insurers require that prior to covering dysphoria in childhood does not they morally complicit in this implicit inevitably continue into adulthood.”6 transgender procedures (e.g., discrimination, and if not, why not? therapy or surgery) the treating Only 6 to 23 percent of boys and 12 If an evaluation is necessary for the to 27 percent of girls treated in gender physician refer the trans person trans person to receive the intervention to a therapist for evaluation and a he or she wants, the therapist then recommendation and when providers Mid-Atlantic Ethics Committee Newsletter 3 clinics showed a persistence of their and discriminatory beliefs are now of Psychiatry, Uniformed Services gender dysphoria into adulthood. changing. For example, one court has University, at 43-54, at 47. https:// Gender dysphoria is different from recently held that a non- biological, www.cstsonline.org/resources/ gender identity, however, so it is non-adoptive partner should have resource-master-list/2015-artiss- unclear what clinical significance, if legal standing for both visiting and symposium. any, this statistic should have. custody privileges. The court said 3 Olsson A, Kopsida E, Sorjonen K, Savic I. (2016). Testosterone and The best approach may be to give that discriminatory views regarding same sex partners are currently estrogen impact social evaluations and these younger persons more time to vicarious emotions: A double-blind “unsustainable.”9 be able to better determine who they placebo-controlled study. Emotion, are and what they think is best for Providers seeking an excellent 16(4): 515-523. them. This may be especially true and regularly updated source of 4 Kääriäinen M, Salonen K, Helminen because there is still limited research optimal standards of care may find M, Karhunen-Enckel U. (2016). on this question.7 Puberty-suppression guidance from the World Professional Chest-wall contouring surgery in regimes can provide this extra time to Association for Transgender Health female-to-male transgender patients: children and adolescents. Providers website (WPATH).10 The most recent A one-center retrospective analysis should be more cautious when guidance, Number 7, was issued in of applied surgical techniques and treating these individuals when the 2011 and is used worldwide. results. Scand J Surg. 2016 Apr. 22. interventions they want are more pii: 1457496916645964. [Epub ahead of print]. irreversible. Edmund G. Howe III, MD, JD 5 Professor of Psychiatry Wierckx K, Gooren L, T'Sjoen A frequently used guideline for G. (2014). Clinical review: Breast determining when to initiate gender- Director, Programs in Ethics development in trans women receiving affirming treatments is the length of School of Medicine, USUHS cross-sex hormones. J Sex Med. time transgender persons have lived Senior Scientist 11(5):1240-1247. Center for the Study of Traumatic openly as their gender identity. The 6 Drescher, J., Pula, J. (2014). Ethical strictness with which this criterion Stress (CSTS) issues raised by the treatment of should be applied, however, may vary gender-variant prepubescent children. depending on several circumstances NOTE: The opinions or assertions Hastings Center Report, 44, Suppl 4: such as the age of the person wanting contained herein are the private views S17-S22. of the author and are not necessarily the intervention and the degree 7 Olson-Kennedy, J., Cohen-Kettenis, those of the AFRRI, USUHS, or the to which this intervention can or P.T., Kreukels, B.P., et al. (2016). Department of Defense. The author can’t be reversed. Here, however, Research priorities for gender would like to thank Sam Williamson, a providers should also be aware that nonconforming/transgender youth: 2d year law student at the University of gender identity development and in many contexts, it may be difficult Maryland School of Law, who provided biopsychosocial outcomes. Curr Opin or impossible for transgender persons helpful comments on an initial draft of Endocrinol Diabetes Obes 23(2):172- to spend time living as the gender the article. they are. Thus, this criterion may best 179. remain open to allowing exceptions. 8 Farr, R.H. (2016) Does Parental REFERENCES/ENDNOTES Sexual Orientation Matter? (Oct. 2016) Finally, transgender persons may A Longitudinal Follow-Up of Adoptive 1 Hartocollis, A. The New Girl in want to have and raise children. Families with School-Age Children. School: Transgender Surgery at 18, They may want medical help to do Dev Psychol 2016 Oct. 20. [Epub The New York Times, N.Y. Region, this. Here again providers may find ahead of print]. that they can serve an important role June 16, 2015 http://www.nytimes. com/2015/06/17/nyregion/transgender- 9 Feuer A. (Aug 30, 2016). New York’s as advocates. Unfortunately, trans minors-gender-reassignment-surgery. Highest Court Expands Definition of persons may encounter exceptional html (This site shows a short video clip Parenthood, New York Times http:// difficulties when seeking to have of the girl who made this change). www.nytimes.com/2016/08/31/ children because of lingering false nyregion/new-york-court-parental- 2 Pula, J. Essentials for the Psychiatrist beliefs that LGBT persons may be Working with Transgender Patients. rights.html. A version of this article less effective as parents. Providers Artiss Symposium 2015: Current appears in Aug. 31, 2016, p. A17 of the should know that this is not the Concepts in Psychosomatic Medicine. New York edition. case and they should be willing to Sponsored by the Department of 10 Ethics and Standards of The advocate accordingly for transgender Psychiatry, Walter Reed National World Professional Association for persons who seek to be parents.8 Military Medical Center National Transgender Health (WPATH) are at: Fortunately, this and similar false Intrepid Center of Excellence Sleep www.wpath.org/site_page.cfm?pk_ Laboratory Department Center for the association_webpage_menu=1347&pk. 4 Mid-Atlantic Ethics Committee Newsletter Study of Traumatic Stress Department ORGAN DONATION & TRANSPLANTATION: ETHICS, RELIGION, & INTERPROFESSIONAL COLLABORATION

On November 1, 2016, MHECN, in value-laden task of transplant wait list. collaboration with the University of selecting recipients. Another milestone Maryland, Baltimore (UMB) Schools They notoriously in transplant medicine of Law, Medicine, Nursing, Pharmacy, considered social was the passing of the and Social Work, the UMB Graduate worth criteria and Uniform Anatomical School, and the Institute for Jewish favored individuals Gift Act (UAGA) in Continuity, co-sponsored the Third like themselves. The 1968, which regulates Annual Interprofessional Forum on Seattle committee the donation of organs, Ethics and Religion in Health Care: stands in contrast to tissues, and other Challenges in Organ Donation and today’s transplant parts in Transplantation. review committees the U.S. Notably, to Silke Niederhaus, MD, clinical and ethics facilitate adherence assistant professor of surgery at committees, which to the “Dead Donor the University of Maryland School are held accountable to more objective Rule” (that a person must be dead of Medicine, provided a unique and transparent criteria when faced before life-preserving organs can be perspective on being both a transplant with decisions about allocating scarce procured), the UAGA established surgeon and an organ recipient (she resources. death of a person as occurring when received a kidney transplant in 1988). Dilemmas associated with allocating there is irreversible cessation of She recounted a school assignment kidney dialysis were averted after either: (1) circulatory and respiratory after her kidney transplant to more dialysis centers emerged and functions, or (2) all functions of the “Describe what your life would be like a patient advocacy campaign led entire brain, including the brain stem. as a 12-13 year old if you had been Congress to pass the End Stage This established two protocols for born one century ago.” She turned in Renal Disease (ESRD) Act in 1972, procuring cadaver organs: (1) after the following minimalist (and self- which provides reimbursement for neurologic death (“brain death”) or (2) proclaimed “cheeky”) essay: “I would kidney dialysis through a Medicare after cardiac death. have been dead.” Indeed, lives saved supplement. While individuals Living Legacy Foundation (LLF), by transplant medicine burgeoned with kidney failure have an option Maryland’s OPO, in collaboration after advances in post-transplant in dialysis, 18 people waiting for with staff from the University of immunosuppressants reduced organ a life-saving organ transplant die Maryland Medical Center (UMMC), rejection rates and improved transplant every day. In the 1980s, news of presented two simulations at the outcomes. Still, demand for organs organs being bought and sold raised November 1 conference depicting outstrips supply, raising ethical concerns about exploitation. Congress best practices for approaching family questions about methods for increasing responded by passing the National members about organ donation after supply and fairly allocating available Organ Transplant Act (NOTA) neurologic death. The first simulation organs. in 1984, which made it illegal to involved the mother of a teenager A precursor to transplant ethics compensate organ donors. NOTA who had been shot (played by Laurel occurred when Scribner and was amended in 1988 to establish Gaffney, MS, LLF’s Manager of colleagues invented the “Scribner Organ Procurement Organizations Hospital Services), the physician in shunt” in 1960, which allowed (OPOs) through a contract with the charge of the boy’s care (played by people otherwise dying from kidney United Network for Organ Sharing Nirav Shah, MD, Program Director failure to receive outpatient kidney (UNOS), which currently oversees for the Pulmonary and Critical Care dialysis. Given the limited supply of 58 OPOs in the U.S. and territories Fellowship program at UMMC), a dialysis machines, a lay committee in 11 regions. NOTA’s Final Rule, nurse transplant coordinator (Tyree was assembled in Seattle in 1961 to implemented in 2000, called for Nutter, RN, MA, UMMC’s Organ decide who should get access to the reducing the criteria for organ wait and Tissue Donor Program’s in-house twice-weekly dialysis. The seven list candidates, prioritizing medical coordinator), an OPO family services committee members (dubbed the urgency, and identifying standardized coordinator (Heba Youssef, LLF’s “God Committee” in a landmark Life objective medical criteria to assess Family Services Coordinator), and a Magazine article) grappled with the medical urgency of those on an organ Mid-Atlantic Ethics Committee Newsletter 5 hospital chaplain (Rabbi Ruth Smith, of a designated donor rather than • Is it fair to re-transplant someone UMMC’s Lead Chaplain for organ obtain surrogate consent for organ with organs that could go to those transplant). The goal for this encounter procurement after brain death is on the wait list awaiting an initial was to explain to the mom that her son confirmed (called “first person transplant? had died, based on tests confirming authorization”). Some OPOs have • Is preserving geographic priority irreversible loss of brain function gone to court to compel organ of cadaver organs the fairest way (e.g., unreceptivity/unresponsivity procurement for a designated donor to allocate them? in absence of hypothermia or central if a family objects to organ donation. nervous system depressants, no In states like Ohio, where OPOs have • What is the proper role of media movement or reflexes, no breathing taken such a strong stance, there has appeals for those on an organ after ventilator removal for 10 been some backlash against organ and transplant list? minutes, a flat EEG, and lack of blood tissue donor registration; critics argue • What constitutes informed flow to the brain). Communicating that current organ donor registration consent (and assent) for organ this news with compassion, addressing practices (e.g., at motor vehicle transplant? the mom’s strong emotions, and administrations) do not provide valid • What obligations do we owe to minimizing medical jargon, were key. informed consent (Iltis, 2015). Thus, donor families? The second simulation involved the OPOs and other organizations that promote organ and tissue donation are • What obligations do we owe to same individuals with Youssef taking patients after transplant? the lead in explaining the option of looking for ways to educate the public organ donation to the mom. Separating and encourage designated donors to Rabbi Shmuel Silber addressed the these discussions is one way in which talk with their loved ones about their role of religious beliefs in decision- clinicians protect against role conflicts preferences. making related to organ donation and resulting from dual obligations to Anita Tarzian, PhD, RN, MHECN’s transplantation. Most religions place care for a dying patient and to support Program Coordinator and member of high value on saving lives and thus are the organ donation process for the LLF’s ethics committee and Clinical generally supportive of organ donors benefit of organ transplant recipients. Advisory Board, touched on some and recipients. Regarding living One challenge that OPO staff deal of the many ethical conflicts arising organ donation, risks include physical with is explaining the process of in transplant medicine (see Focus harm to oneself, lost wages, time organ procurement to grieving family on Organ Procurement Strategies away from family, or disappointment members. The bodies of patients on page 7). She told the story of if a recipient’s transplant outcomes confirmed to be dead by neurologic Marylander Daniel Canal, who in are not what was hoped. These criteria are “treated” with mechanical 1992, at age 13, ended his five-year risks must be weighed against the ventilation, drugs, and (if allowed wait on a transplant list after raising benefits of altruistic feelings of by family) even cardiac resuscitation national media attention about his long accomplishment, personal growth, attempts (if the heart stops beating wait in Pennsylvania for a liver and increased self-esteem, and for some, before the surgical team is ready to intestines transplant. The combination fulfilling religious duty. However, procure the organs) to preserve organs of media attention and shorter organ religious persons may also succumb for donation. In donation after cardiac wait list times in Florida led to Daniel to feelings of guilt serving as primary death, loved ones have a matter of finally getting the transplant surgery motivator. Truly informed consent minutes to “say goodbye” after the he needed. Daniel subsequently had requires understanding the risks and patient is pronounced dead before three surgeries to transplant a liver, benefits, and making a free choice the surgical team initiates organ intestines, pancreas, and stomach from that is consistent with one’s life plans, procurement surgery. OPO staff do all three donors. His body rejected the beliefs, and values. Such decisions they can to minimize loved one’s grief intestines from the first donor. The require thoughtful reflection/prayer and distress by explaining procedures emergent nature of the second surgery and, when appropriate, consultation and their purpose in advance and resulted in a less-than-ideal match and with a trusted member of the clergy. respecting patients’ and families’ subsequent liver transplant failure. The One area of misunderstanding is spiritual and religious beliefs and final set of organs from a deceased Orthodox Jewish interpretations of practices. child in Puerto Rico have worked when a patient is considered dead Another challenge faced by OPO to this day. Daniel’s case embodies such that organs may be procured. staff is complying with a revision many of the ethical issues transplant Many observant Jews define death as to the UAGA implemented in 2006, medicine presents, including: the moment when cardiopulmonary which directs OPOs to notify family • Is it fair to give multiple organs function irreversibly stops, so if to one person? Cont. on page 8 6 Mid-Atlantic Ethics Committee Newsletter FOCUS ON ORGAN PROCUREMENT STRATEGIES

Should family be allowed to direct the donation of a loved one’s organs? In general, directing organs from a dead donor to a social group is not allowed. However, a surrogate can direct a loved one’s organs to a named person, hospital, or health organization. The opposition to these requests is mostly justice-based. If the organs would otherwise be wasted, utilitarians would lean toward allowing this, but would also consider the bad press that could result, which could damage the transplant enterprise. Thus, OPO staff encourage non-directed donation before pursuing requests for directed donation.

Is it OK to advertise for an organ? Individuals have mounted media campaigns to solicit either a living organ donation or a directed cadaveric donation. While this favors those with financial means and social connections for such campaigns, it may also increase public awareness, which could lead to increased organ donor registration. OPO staff and transplant programs must remain vigilant to avoid commercializing the process of organ donation and transplantation (Veatch & Ross, 2015).

What’s wrong with buying and selling organs? The National Organ Transplant Act (NOTA) prohibits selling organs in the U.S. In other countries, evidence of widespread exploitation and human organ trafficking has highlighted the dark side of allowing an open market for organ trade. Exploitation of the poor and marginalized individuals in China, Israel, India, Pakistan, and Bangladesh have made headlines. So far, Iran is the only country that has legalized and regulates marketed living donor organs. Payment is between $4,000 to $8,000. In 2010, 70% of kidneys transplanted in Iran were living unrelated, 5% related, and 25% deceased. Proponents claim this induces less familial pressure, especially on women (Veatch & Ross, 2015). Conditions in the U.S. make it highly unlikely we will ever adopt a market approach to resolve the issue of shortage of organs for transplantation.

Why not switch to an opt-out model for organ procurement after death? An “opt-out” model for organ procurement after death involves allowing organ procurement to proceed unless one has registered beforehand to opt out. Countries closer to a communitarian or socialist culture are more apt to use this method. Veatch and Ross (2015) criticize the terminology of “presumed consent” for this model, arguing that it’s inaccurate to conclude that individuals who failed to opt out have given valid informed consent. An unintended consequence could be that larger numbers than anticipated would opt out, resulting in the number of organs being procured dipping below the current rate of about 75%. Deontologists (ethicists focusing on duties regardless of outcomes) might argue that those who would want to opt out might be different from others in ways that discriminate and thwart their ability to opt out, such as applying for a driver’s license or having access to the opt-out information and process steps. Deontologists might also propose that even if an opt-out procedure resulted in a net gain of organs for transplantation, it would not be worth it to procure organs from some objectors who failed to opt out. Since most cadaveric organs in the U.S. are procured by family consent at the time of death, rather than by people registering as designated donors, it’s unlikely that we will take the risks described above by switching to an opt-out system.

REFERENCE

Veatch, R.M. & Ross, L.F. (2015). Transplantation Ethics (2nd Ed.), Washington, DC: Georgetown University Press.

Mid-Atlantic Ethics Committee Newsletter 7 Organ Donation & Transplantation: Ethics, Religion, & Interprofessional Collaboration Cont. from page 6 a patient is declared dead based Laurie Thompson, RN, UMMC’s since alcoholism is a chronic disease, on neurologic criteria but is on a Paired Kidney Exchange (PKE) with alcohol recidivism a symptom ventilator and his or her heart is Coordinator, described how the PKE of that disease. From an efficiency still beating, an Orthodox Jew may helps match donors with recipients. If perspective, research has shown that consider the person to still be alive. a live donor wants to give a kidney to alcoholics with cirrhosis do well Clinicians who don’t appreciate a friend or relative but is incompatible after transplant, and that requiring the distinction between a medical with the recipient, the program lists six months or more of sobriety prior or legal definition of death and a that individual as a potential donor to transplant has not been shown religious interpretation may think such to another recipient. In exchange, the to produce better post-transplant individuals don’t understand what donor’s friend or relative is guaranteed outcomes (particularly if patients brain death means. Observant Jews a kidney from a matching donor on have strong social support and lack may fully understand that their loved the list. It’s critical to ensure that all other predictors of poor outcomes) one’s brain function is permanently parties are adequately informed and (Chodhary et al., 2016). While NOTA lost and accept the “brain dead” that living donors are making a free and UNOS provide guidance to diagnosis, but they simply may not choice. transplant programs regarding organ equate the irreversible loss of brain The morning conference panel wait listing criteria, actual listing function (a medical judgment) with culminated with Lindsey Pote, criteria and the wait list vetting the death of the person (a value PharmD, Program Director of the process varies among transplant judgment). How clinicians and policy PGY2 Solid Organ Transplantation programs. Usually, decisions are makers should accommodate this Residency at The Johns Hopkins made by the program’s transplant religious belief deserves thoughtful Hospital, giving an overview of the review committee, but occasionally, a reflection. role of the transplant pharmacist hospital ethics committee is asked to Sterling Brown from the Jordan in educating transplant patients weigh in. What makes these decisions Taylor Brown (JTB) Foundation about their lifelong need for so difficult is the reality that listing a (http://www.jtbrownfoundation.org) immunosuppression and how post- sicker patient for an organ transplant opened the morning panel session transplant medication management will deprive another patient farther describing how the Foundation must be tailored to each individual. down the list of that organ. Veatch and honors the legacy of its namesake, Adherence barriers such as excessive Ross (2015, p. 354) acknowledge this Sterling’s younger brother, who medication costs, incompatibility with dilemma, but conclude: “We know of became an organ donor after his other medications, and managing side no sound theoretical basis for arguing untimely death from senseless gun effects are routinely addressed. for any particular formula that would establish exactly what the proper ratio violence. Mr. Brown described his The conference afternoon session family’s experience learning that should be for considering present included a simulated ethics committee need and over-a-lifetime need.” The Jordan had registered as an organ and discussion about a case involving tissue donor as they were absorbing work of transplant review committees, a patient declined by a transplant clinicians, and ethics committees in the news of his death. Jordan’s organs program to be listed for a liver saved seven others’ lives and restored weighing these decisions is no small transplant due to lack of six months task. two individuals’ eye sight. The JTB of alcohol sobriety. The ethics of Foundation is working to spread a transplant medicine involves balancing message of peace over violence, and efficiency (e.g., maximizing benefit REFERENCES to encourage individuals to register as and minimizing harm) and equity organ and tissue donors. When asked (justly allocating scarce resources). Choudhary N.S. et al. (2016). Liver how to approach someone resistant From an equity perspective, some transplantation for alcohol-related to registering as an organ donor for feel alcoholics in general don’t have liver disease. Journal of Clinical and Experimental Hepatology, 6(1), 47-53. fear that clinicians won’t work as as high a claim to a liver transplant hard to save his or her life, Mr. Brown because their actions caused their Iltis, A.S. (2015). Organ donation, brain suggests that such individuals can liver failure. Yet, equity also demands death and the family: Valid informed always decline to register and still tell treating like cases alike. Many would consent. J Law Med Ethics, 43(2), 369- 82. their families that they wish to be an judge barring alcoholics from liver organ and tissue donor if they are ever transplants but not others whose self- Veatch, R.M. & Ross, L.F. (2015). in a position to donate. injurious behaviors contributed to their Transplantation Ethics (2nd Ed.), Washington, DC: Georgetown organ failure as unfair, particularly University Press. 8 Mid-Atlantic Ethics Committee Newsletter CASE PRESENTATION One of the regular features of this Newsletter is the presentation of a case considered by an ethics committee and an analysis of the ethical issues involved. Readers are both encouraged to comment on the case or analysis and to submit other cases that their ethics committee has dealt with. In all cases, identifying information about patients and others in the case should only be provided with the permission of the patient. Unless otherwise indicated, our policy is not to identify the submitter or institution. We may also change facts to protect confidentiality. Cases and comments should be sent to [email protected], or MHECN, Law & Health Care Program, University of Maryland Francis King Carey School of Law, 500 W. Baltimore St., Baltimore, MD 21201.

CASE STUDY FROM A TERTIARY CARE HOSPITAL “Brenda” is a 79 year old former Opera soprano who has been separated from her husband, “Vince,” for the past 10 years. They never divorced and remain friends. Brenda moved in with her partner, “Janice,” after separating from Vince 10 years ago. Brenda has no children. Brenda has moderate to severe Alzheimer’s disease, and has been managed thus far with support from an extensive network of friends and family, and home health assistants who visit the home 3-5 times a week. Until about three months ago, Brenda was attending an adult dementia daycare program and enjoying outings such as concerts and visits to the Botanic Gardens. Despite her memory and cognitive deficits, she seemed to enjoy daily activities. Over the past three months, her physical condition deteriorated, with a hospital admission two months ago for pneumonia. Brenda is now admitted to the hospital again for pneumonia, thought to be caused by aspiration. A swallow study confirms she is at risk for aspiration. The medical team recommends that she avoid oral intake and that a g-tube be placed and tube feedings initiated to avoid repeat aspirations. Hospital staff determine that Brenda lacks capacity to make medical decisions. Janice tells the team that Brenda would not want the g-tube placed, as she loves to eat (particularly sweets and red wine). Janice requests that Brenda be allowed to eat and drink what she wants. She says the home caregiving team will try to minimize the risk of aspiration as best they can but that making Brenda forego oral food/ nutrition is not worth the impact on her quality of life. In other words, she thinks Brenda would prefer to take the risk of aspirating by eating foods she likes, even if this hastens her death. She asks that Brenda be allowed to resume oral feedings pending discharge home, and says she will follow up with home hospice. The physician in charge is reluctant to certify that Brenda is in a terminal condition to qualify for hospice. He asks for an ethics consultation to explore whether allowing Brenda to resume oral feedings while in the hospital or at home—foregoing the g-tube—might be considered a form of elder neglect. Brenda has no advance directive.

COMMENTS FROM A SPEECH- • Is a hospice referral appropriate weight loss (such as creating color LANGUAGE PATHOLOGIST at this stage? contrast between the plate, the table • Is it ethically justifiable to ask and the food to promote self-feeding Ambiguity of ethical decision- a patient or surrogate to sign as an adaption to visual changes). The making can be reduced by considering a waiver to acknowledge risks swallow mechanism will be affected multiple perspectives and attending to of behaviors not medically (dysphagia), initially with food staying facts. Toward this end, I will address recommended? in the mouth because the person does the following questions: not realize what it is. This results in food falling from the front of the • What is the physiology of the Physiology & Disease Progression mouth, staying unswallowed in parts swallowing disorder? Brenda has advanced Alzheimer’s of the mouth, such as the cheeks, and • What are the proposed dementia (AD). Some aspects of the at times falling back into the throat intervention certainties and disease can be tempered but AD is before the person is ready to swallow. uncertainties? incurable. Inherent in the disease are This may lead to coughing as the food • Who is the legal health care features leading to a gradual loss of enters the airway (aspiration). If the decision maker? appetite, influenced by changes in cough reflex is depressed and there taste, loss of cognitive abilities to is no reaction, this is called “silent • Who else should be contacted to process what food is, and changes aspiration.” contribute relevant information? such as narrowing of the visual field. Why do clinicians exhibit alarm • What constitutes elder neglect? Adaptations may delay the inevitable Mid-Atlantic Ethics Committee Newsletter 9 2012). Discomfort and associated behaviors such as pulling at the tube and resulting combative actions may result in the use of chemical or physical restraints. Thus, the potential use of a feeding tube requires careful consideration of the disease path, the costs, benefits, and possible harms. Appropriate professionals should be consulted, such as a speech- language pathologist who can provide advice such as how to maintain oral health and minimize the risk of lung infections (e.g., positioning Brenda upright when she is eating and drinking, not feeding her when she when the concept of aspiration is conditions, multiple medications, and is drowsy, letting her choose finger raised? Historically, clinicians noted smoking—but not dysphagia. foods, and making nutritious AND that people with dysphagia got chest To continue living, a person palatable items easily available to her infections and thus blamed the poor with AD will at some point need to graze on). swallow. However, research has supplementation, which typically shown us that it is not whether one is tube feedings. A feeding tube is a Who is the Legal Decision Maker? aspirates but what one aspirates medical intervention and so it (and From the information we have, it that is the problem. People who fall feedings through it) can be withheld sounds like Brenda and Janice did into cold rivers and nearly drown or withdrawn just like any other at least have “The Conversation” have lungs full of water but do not treatment. In reality, the emotional (see http://theconversationproject. necessarily go on to develop chest connections and symbolism of eating org/), but Brenda’s wishes were never infections. How then might a little and of providing food and drink to formally documented, such as in an food and drink cause a problem, those we love as an act of caring advance directive appointing Janice and how is it that people who are results in greater psychological as Brenda’s health care agent (HCA). not taking oral food or drink still discomfort when considering Maryland’s Health Care Decision’s get chest infections? To be brief, the withdrawing this treatment, even Act (HCDA) recognizes the “patient’s mouth is a dirty place with many among physicians (Christakis & spouse or domestic partner” as microbes, some of which are not Asch, 1993). Thus, the treatment the authorized decision-maker for meant to be there. But the healthy may be continued in the absence of patients lacking decision-making person has defenses and a lower benefit, keeping people alive long capacity who have no appointed risk of chest infections. The primary after a natural death might have HCA or guardian and are considered defense is to keep the microbes occurred, at times causing increased to be in a terminal or end-stage under control, which requires manual burden, or hastening death in some condition. “Terminal” is defined brushing of the teeth and gums (or cases. dentures, or just gums!), to have a as an “incurable condition caused working swallow mechanism, to eat Evidence shows that feeding tube by injury, disease, or illness which, and drink in a position that lessens the use in dementia does not ameliorate to a reasonable degree of medical chance of material sneaking into the the problems historically presumed, certainty, makes death imminent and lungs, and to have a good infection- such as poor nutritional status, skin from which, despite the application of fighting mechanism. Impairments breakdown, and slowed wound life–sustaining procedures, there can in any of these cause problems. healing (Teno et al., 2012). There be no recovery” (HG §§5-601(u)). The factor most strongly associated are downsides to tube feedings: “Imminent” is not defined. “End- with developing a chest infection is increased risk of reflux from the tube stage condition” is defined as “an dependence on others for feeding feed, leading to aspiration of stomach advanced, progressive, irreversible (Langmore et al., 1998). Other contents, leading to pneumonitis condition caused by injury, disease, factors include poor oral care (which (Marik, 2001). Infection at the or illness that has caused severe and no one wants to do), number of feeding tube’s entry site is more permanent deterioration indicated decayed teeth, tube feeding, comorbid likely to occur (Blomberg, Lagergren, by incompetency and complete Martin, Mattsson, & Lagergren, physical dependency, and for which, 10 Mid-Atlantic Ethics Committee Newsletter to a reasonable degree of medical raises the serious issue of elder clinicians fearful of doing more harm certainty, treatment of the irreversible neglect. The ethics consultant should than good. This issue often comes up condition would be medically acknowledge that the physician is in the long-term care environment, ineffective” (HG §§5-601(j)). It’s thinking broadly about consequences, where patients or surrogates are unclear whether Brenda meets criteria perhaps framing the lack of nutrition sometimes asked to sign “waivers” for either. and possible increased pneumonia (see Alternative Treatment Consents Since Brenda separated from Vince risk with oral feedings as the primary on page 12) releasing the facility a decade ago but never divorced, considerations. The physician may from liability if they choose to engage it’s unclear whether Vince’s legal feel that allowing Brenda to forego in a behavior contrary to clinical status as Brenda’s husband trumps tube feedings and to eat or drink recommendations. Is this ethically Janice’s status as domestic partner, by mouth represents a professional justified? unless Vince is unwilling to serve breach of ethics. Why? Until very According to the Centers for as surrogate, or Brenda retains the recently the received wisdom was that Medicare and Medicaid Services cognitive capacity to appoint Janice physicians must maintain life. But (2016), patients’ rights (and those as her HCA. That Brenda and Vince equally we might consider whether an of their health care decision-makers have remained friends may bode unwanted medical intervention with where decisional capacity is an well for cooperative decision-making the possible negative consequences issue) must be respected in their care between Vince and Janice. Whether outlined above would be a form of plan—they can consent to and refuse Vince has a legal claim in decision- physical (and psychological) abuse. treatment, without fear of retribution, making is a secondary concern to The medical team should focus on coercion or cessation of general care. whether Brenda, if she could tell us, what is the standard of care for this It’s stated: would value or dismiss his input. particular patient in her particular condition. “This provision addresses assisted Even when people are divorced they nutrition and hydration, and, like sometimes remain close and value Whether a patient is considered all treatments, residents have the each other’s advice. As with other to be hospice eligible is a matter right to accept or refuse. Accepting scenarios where the patient cannot of professional judgment. The a resident’s refusal, or deferring speak for herself, we try to gather designation as “terminal” for to their documented preferences, information from all sources to hospice differs from the definition does not absolve a facility of its build a picture of what the person in the HCDA—generally, a patient responsibilities to provide adequate might have wanted. If uncertainty should have a life expectancy of nutrition or permit the facility not to remains regarding Brenda’s wishes, six months or less. Physicians who meet a resident’s nutritional needs. her extended network of friends and do not routinely certify patients for It does recognize that a competent family, and her primary care provider hospice may be unfamiliar with the resident has the right to make may also provide insight. criteria used to designate a patient as choices about assisted nutrition terminally ill. There is often a fear and hydration and that there are Appropriate Hospice Referral or from physicians that: a) if they certify circumstances where failure to Elder Neglect? a patient for hospice care and the maintain acceptable parameters of patient lives beyond six months, the Any person of sound mind can nutritional status are not a reflection clinician will be penalized, and/or b) of failure(s) of care” (Centers for refuse medical interventions. This the patient or family might perceive becomes more difficult when Medicare & Medicaid Services, it as the medical team giving up on 2016, p. 68849). someone else is making a decision them. In most cases, a discussion to refuse an intervention (e.g., tube with the hospice medical director or This means that if a patient chooses feedings) and consent to a plan of palliative care colleagues will clear an approach different to that advised care that prioritizes quality of life up any ambiguity, and the earlier by the facility, even if the patient over life prolongation (e.g., hospice the better (American Academy of cannot maintain her nutritional and pleasure feedings). If Brenda Hospice and Palliative Medicine, status or has increased risk of lung is considered to have a terminal 2017). infections from oral intake, then such or end-stage condition, then it is outcomes will not be considered a acceptable to withhold artificial fault of the facility (presuming the nutrition/hydration. If she is not Pleasure Feeding & Waivers decision is informed and efforts are considered to be in either condition, Allowing Brenda to eat or drink made to minimize risks). then decision-making may require by mouth for pleasure despite more discussion, particularly absent her swallowing impairments Cont. on page 12 an advance directive. The physician understandably makes some Mid-Atlantic Ethics Committee Newsletter 11 Case Presentation WAIVERS Cont. from page 11 Crucial in this situation is that ALTERNATIVE TREATMENT the dialogue of discussion has been carefully documented. That CONSENTS is, a clear record should be kept of all discussions documenting the Medicare and Medicaid regulations affirm an individual’s right to information given to Vince and refuse medical recommendations, even if this exposes the individual Janice and their responses, including to harm. The Centers for Medicare and Medicaid Services (CMS) verbatim quotes to demonstrate provides guidance to health care facilities (such as nursing homes) their understanding. This is what the regarding how to address such refusals. Facility administrators and courts will require if a case is ever staff may fear being blamed and sanctioned if patients or residents brought forth. Any signed “waiver” under their care choose to disregard medical advice and experience document without the aforementioned harm. One solution implemented by some facilities is to have the documentation of discussions is at resident or surrogate sign a waiver document in which they absolve best useless in the eyes of a court, and the facility from liability. This is not recommended. Instead, CMS at worst, may be considered a form encourages facilities to ensure that the following duties have been met of coercion—which is also clearly when faced with refusal of medical recommendations (CMS, 2016): addressed in the Federal Register document (Centers for Medicare & Medicaid Services, 2016). • Assess the resident’s decision-making capacity and involve the health care agent or legal representative if capacity is determined to be lacking; What Should be Done? • Determine and document what the resident is refusing; Discussions about end-of-life preferences, including decisions • Assess the reasons for the refusal; about feeding tubes, should happen • Advise the resident about the consequences of refusal; more routinely for all people, but • Offer pertinent alternative treatments; and particularly for persons with AD (and much earlier in the disease • Continue to provide all other appropriate services. process). These discussions need to be documented in the form of Lawyers Kelly MacDonald and Michael Seale provide examples of HCA appointments, living wills, and “Alternative Treatment Consents,” which allow a facility to document summaries in the medical record. their efforts to honor a patient’s or resident’s choice while meeting Absent that, the best the team can do CMS’ regulations. Their list of “Do’s and Don’ts When Developing in this case is to identify the stage of Alternative Treatment Consents,” and examples, is available at https:// Brenda’s disease (i.e., whether she is www.healthlawyers.org/Events/Programs/Materials/Documents/ considered “terminal” and hospice- LTC15/ee_mcdonald_seale.pdf. eligible), clarify her wishes, reflect these in appropriate discharge orders on the Maryland Medical Orders for REFERENCES Life-Sustaining Treatment (MOLST) form, and if appropriate, work with Centers for Medicare & Medicaid Services (2016). State Operations Manual hospice to arrange for home support. Appendix PP, Guidance to Surveyors for Long Term Care Facilities, F 155 § 483.10(b)(4) and (8). Available at: https://www.cms.gov/Regulations-and- Paula Leslie, PhD, FRCSLT (UK), Guidance/Guidance/Manuals/downloads/som107ap_pp_guidelines_ltcf.pdf. CCC-SLP (USA) McDonald, K.A. & Seale, M. (n.d.). Management of Healthcare Decision Program Director: Doctor of Clinical Making in Nursing Facilities: Who Gets to Decide? Available at: https:// Science (CScD) www.healthlawyers.org/Events/Programs/Materials/Documents/LTC15/ Professor, Communication Science ee_mcdonald_seale.pdf. and Disorders Specialist Advisor (Swallowing Disorders) RCSLT University of Pittsburgh

12 Mid-Atlantic Ethics Committee Newsletter REFERENCES Disease Control defines neglect she continues to enjoy eating and as: “failure by a caregiver or other drinking. Janice believes Brenda’s American Academy of Hospice and responsible person to protect an quality of life will be significantly Palliative Medicine. (2017). What is elder from harm, or the failure to diminished if she is unable to eat Hospice Care? Palliative Doctors. meet needs for essential medical or drink. Even if it was decided Retrieved from http://palliativedoctors. care, nutrition, hydration, hygiene, that a feeding tube would provide org/hospice/care. clothing, basic activities of daily needed nutrition/hydration, it seems Blomberg, J., Lagergren, J., Martin, living or shelter, which results in a unnecessary to restrict Brenda from L., Mattsson, F., & Lagergren, serious risk of compromised health taking food and drink she enjoys. P. (2012). Complications after and safety” (https://www.cdc.gov/ There is a risk of aspiration present percutaneous endoscopic gastrostomy violenceprevention/elderabuse/ in both circumstances. Further, in a prospective study. Scandinavian definitions.html). withholding things that enhance her Journal of Gastroenterology, 47(6), quality of life, given her presumed 737-742. When examining whether or not placing a feeding tube may be a form inability to understand the risk they Centers for Medicare & Medicaid of elder neglect, one must examine pose for her, could be seen as harmful Services. (2016). Medicare & Medicaid first whether its placement would to Brenda, as she may not understand Programs; Reform of Requirements why she is not allowed or offered for Long-Term Care Facilities. (81 be clinically and ethically justified. food and drink. Though continuing FR 68688 ). Federal Register: United Feeding tubes are used to provide or States Government. Retrieved from supplement nutrition when a patient to eat and drink may constitute a https://www.gpo.gov/fdsys/pkg/FR- is incapable of taking (sufficient) food safety risk for Brenda, her legal 2016-10-04/pdf/2016-23503.pdf. orally, like Brenda. Although they decision maker can discern that this risk is acceptable given the benefit it Christakis, N. A., & Asch, D. A. may be used to minimize aspiration (1993). Biases in how physicians of stomach contents, this may still provides. The physician and team are choose to withdraw life support. occur with tube feedings. They may responsible for educating the decision Lancet, 342(8872), 642-646. be contraindicated in the face of maker and caregivers on the risks and ways of minimizing the risks to Langmore, S. E., Terpenning, M. S., terminal illness, when a patient is Schork, A., Chen, Y., Murray, J. T., physiologically unable to tolerate Brenda, with or without the feeding Lopatin, D., & Loesche, W. J. (1998). the placement of the tube, when the tube. Predictors of aspiration pneumonia: patient would be unable to assimilate With regard to the question of how important is dysphagia? the nutrition provided by it, or when neglect, this requires not providing Dysphagia, 13(2), 69-81. the patient is unable to tolerate for a basic need. What one needs is Marik, P. E. (2001). Aspiration the tube itself and intentionally or dependent on circumstance. Brenda pneumonitis and aspiration pneumonia. unintentionally pulls it out. suffers from a chronic, progressive, New England Journal of Medicine, long term illness that will bring about 344(9), 665-671. Before addressing the question of neglect, Brenda's decision maker her death, possibly within the next Teno, J., Gozalo, P., Mitchell, S., Kuo, and her physician have to decide six to twelve months. What care is S., Rhodes, R., Bynum, J., & Mor, V. appropriate for her is discerned by (2012). Does feeding tube insertion whether the placement of a feeding tube is ethically justified. Brenda did her physician and legal decision and its timing improve survival? J Am maker in light of her “big picture.” Geriatr Soc, 60(10), 1918-1921. not complete an advance directive, so there is no clear evidence of her As the burden of the feeding tube wishes about tube feedings. There is may outweigh its benefits, one can also no evidence that placing her on argue that for Brenda, the tube may not be appropriate. Though neglect COMMENTS FROM tube feedings will prolong her life or does not require intention, it is clear A HOSPITAL ETHICS improve her quality of life. Brenda here that if the feeding tube is not CONSULTANT is still able to take food by mouth, although it may not be sufficient to placed, the intention is not to hasten sustain her. There is evidence she or cause Brenda’s death, but rather, When one receives an Ethics is aspirating and she has now been to avoid the physiologic and possible Consultation, the question originally hospitalized twice for aspiration. emotional burdens that providing tube asked may or may not fully capture Even if steps are taken to minimize feedings may cause. the matter at hand. Brenda's physician the chance of aspiration, it is likely Brenda’s physician is “reluctant” has asked whether forgoing the that she will continue to aspirate. to certify that Brenda is in a terminal g-tube might be considered a form Janice notes that Brenda would condition to qualify for hospice. This of elder neglect. The Centers for not want a feeding tube because Mid-Atlantic Ethics Committee Newsletter 13 is not uncommon. Physicians often Under Maryland law, if Brenda is the benefits and burdens of a feeding hesitate to make this determination considered “terminal” as defined in tube, the locus of any disagreement for a multitude of reasons. Ethics the Health Care Decisions Act, her between Vince and Janice, and assist CALENDAR OF EVENTS consultants can ask the “surprise” spouse or domestic partner would in ensuring that Brenda remains the question: “Would you be surprised if be her legal decision-maker. The focus of the decision at hand. If the your patient were to die in the next legislature did not anticipate that disagreement remains, Janice could 6 months?” This, coupled with the someone would have both at the petition the court for guardianship of explicit criteria provided by CMS same time so legally it might be Brenda, but this is a lengthy process for Hospice admission for patients an issue as to who can speak for and a decision would likely have with dementia, can be useful to Brenda. Regardless of who fills this to be made on a more expedient physicians in making this assessment. role legally, her surrogate should timeline. While Brenda is certainly It is not the case, however, that a make decisions using substituted a vulnerable person deserving of patient must meet the criteria for judgment, deciding as Brenda care and protection, it seems from Hospice eligibility to decline life would, taking into consideration the case that she is surrounded by sustaining treatment. If it were, then her current illness, her values, her persons who have her best interests in there would be no place for informed quality of life, and the benefits and mind. In fact, she is likely receiving consent and surrogate decision burdens a particular treatment would more direct caregiver interaction than makers, as CMS would take on the provide. It may be prudent to engage she would in a nursing home, and role of surrogate and prolong all life both Vince and Janice in Brenda’s much of the care is being provided sustaining treatment until Hospice decision making. Even if Vince is the by her friends, those who knew her eligibility. Even if Brenda does not legally authorized decision maker, before her cognitive and physical have a prognosis that currently meets it is likely that Brenda would trust decline. This bodes well for patient- Hospice eligibility criteria, the extent Janice to speak on her behalf, given centered decision-making that yields to which life sustaining treatment their relationship. Even if we do compassionate, positive outcomes. is going to be pursued is important not know that Brenda would have to explore. Regardless of whether chosen Janice as her health care or not a feeding tube is placed, agent, if Vince believes that she Birgitta N. Sujdak Mackiewicz, Ph.D. conversation must be had about under would have valued speaking with Director of Ethics what conditions Brenda will return Janice about this decision, she (and OSF Saint Francis Medical Center & to the hospital. If she aspirates and anyone else she would have engaged) Children's Hospital of Illinois gets aspiration pneumonia or suffers should be included in Vince's Peoria, IL other complications, what treatments discernment. Vince may choose not are appropriate for Brenda? It may be to act as Brenda’s surrogate decision decided that treatment with antibiotics maker, given Brenda and Janice's would be acceptable if they provide relationship, even though he remains more good than harm, but that the legally married to Brenda. If Vince harms of intubation for (pending) remains as decision maker, and he respiratory failure would outweigh and Janice disagree on Brenda’s any good, justifying withholding plan of care, the Ethics Consultant intubation and mechanical could assist in an exploration of ventilation. Whether treatment Brenda’s values, what now enhances refusals by a surrogate are considered her quality of life, and whether a appropriate or inappropriate requires feeding tube (or other life-prolonging consideration of Brenda’s prognosis, interventions) would benefit her. known preferences, and the medical The consultant could also assist in standard of care. identifying any gaps in understanding

14 Mid-Atlantic Ethics Committee Newsletter CALENDAR OF EVENTS RECURRING EVENTS

MARCH Ethics for Lunch Seminars, sponsored by the 2-4 Conflict Resolution and Clinical-Setting Mediation for Johns Hopkins Berman Institute of Bioethics and Healthcare, sponsored by the Center for Conflict Resolution in Ethics Committee, Sheik Zayed Tower Chevy Healthcare LLC, Memphis, TN. Visit: http://www.healthcare- Chase Conference Center (1800 Orleans St.) mediation.net/trainings.html. Baltimore, MD. 12N-1:15PM. Visit: http://www. 22 (1-2PM) The Choice to Become a Research Subject: A First bioethicsinstitute.org/efl Person Perspective, Webinar Discussion led by Rebecca Dresser, March 21 JD, Washington University in St. Louis, available at msubioethics. April 18 clickwebinar.com/brownbag. Visit: http://www.bioethics.msu.edu/ brownbag-webinar/2016-2017-series. May 16 23-24 Fourth National Nursing Ethics Conference, Los Angeles, CA. Visit: http://ethicsofcaring.org/registration/.

24-25 Clinical Ethics Bootcamp, sponsored by Children's Johns Hopkins Berman Institute of Bioethics Minnesota, Minneapolis, MN. Contact: Nneka.Sederstrom@ Seminar Series, either at Sheik Zayed Tower ChildrensMN.Org. Chevy Chase Conference Center (1800 Orleans 24-26 Re-enchanting Medicine: Conference on Medicine and St.) or Feinstone Hall, E2030, Bloomberg Religion, JW Marriott Galleria, Houston, TX. Visit: http://www. School of Public Health (615 N. Wolfe St.) medicineandreligion.com/. Baltimore, MD. 12N-1:15PM. Visit: http:// www.bioethicsinstitute.org/education-training-2/ 27 (1-2PM) Webinar with James Mumford, PhD: Reproduction seminar-series in an Age of Mechanical Reproduction, sponsored by Children’s Mercy Bioethics Center. Visit: https://cmhbioethics.webex.com/. March 12 - Speaker: Lisa Lehmann, MD, PhD, MSc, Executive Director of the National Center for Ethics in Health Care APRIL March 27 - Speaker: Ruha Benjamin, MA, 3 (1-2PM) Webinar with Larry Churchill, PhD, “What would you PhD, Informed Refusal: Towards a Justice-based do if this were your child, Doc?” sponsored by Children’s Mercy Bioethics Bioethics Center. Visit: https://cmhbioethics.webex.com/. April 10 - Speaker: Chris Feudtner, MD PhD, 6 Action for Health Equity, sponsored by the University of MPH, Steven D. Handler Endowed Chair of Maryland Schools of Medicine and Public Health, Adele H. Stamp Medical Ethics; Director, Department of Medical Student Union, University of Maryland College Park. Ethics, The Children's Hospital of Philadelphia 7-8 Second Annual Conference on Reproductive Ethics: New Ideas April 24 - Speaker: Dale Jamieson, MA, and Innovations, Sponsored by Alden March Bioethics Institute, PhD, Professor of Environmental Studies & Albany Medical College, Albany, NY. Visit: http://www.amc.edu/ Philosophy, NYU School of Law academic/bioethics/reproductiveethicsconference.cfm. May 8 - Speaker: Joseph Fins, MD, E. William 16 (1-2PM) Social Determinants of Behavioral Health, Webinar Davis, Jr. M.D. Professor of Medical Ethics, Discussion led by C. Debra Furr-Holden, PhD, Michigan State Weill Cornell Medical College University, available at msubioethics.clickwebinar.com/brownbag. Visit: http://www.bioethics.msu.edu/brownbag-webinar/2016-2017- series. 18-21 Intensive Bioethics Course, sponsored by Houston Methodist Ethics Lunch Rounds (lunch & CME provided), Hospital and The Center for Medical Ethics and Health Policy at Sponsored by the University of Maryland Baylor College of Medicine, Houston Methodist Research Institute, Medical Center Ethics Committee, 22 S. Houston, TX. Visit: http://events.houstonmethodist.org/bioethics. Greene St., Borges Conference Room (N2E30). 12N-1PM. For more information, contact: [email protected] MAY March 24 25-28 Workshop in Clinical Ethics Mediation, sponsored by the April 21 Program in Clinical Conflict Management at the University of Pennsylvania. Visit: http://medicalethics.med.upenn.edu/education/ May 12 master-of-bioethics-mbe/clinical-ethics-mediation.

Mid-Atlantic Ethics Committee Newsletter 15 The Law & Health Care Program Maryland Health Care Ethics Committee Network University of Maryland Francis King Carey School of Law 500 W. Baltimore Street Baltimore, MD 21201

The Maryland Healthcare Ethics Committee Network (MHECN) is a membership organization, established by the Law and Health Care Program at the University of Maryland Francis King Carey School of Law. The purpose of MHECN is to facilitate and enhance ethical reflection in all aspects of decision making in health care settings by supporting and providing informational and educational resources to ethics committees serving health care institutions in the state of Maryland. The Network attempts to achieve this goal by: • Serving as a resource to ethics committees as they investigate ethical dilemmas within their institution and as they strive to assist their institution act consistently with its mission statement; • Fostering communication and information sharing among Network members; • Providing educational programs for ethics committee members, other healthcare providers, and members of the general public on ethical issues in health care; and • Conducting research to improve the functioning of ethics committees and ultimately the care of patients in Maryland. MHECN appreciates the support of its individual and institutional members. MHECN also welcomes support from affiliate members who provide additional financial support.

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