Health Care Law Mid-Atlantic Ethics Committee Newsletter

University of Maryland Francis King Carey School of Law Year 2018

Mid-Atlantic Ethics Committee Newsletter, Fall 2018

This paper is posted at DigitalCommons@UM Carey Law. https://digitalcommons.law.umaryland.edu/maecnewsletter/76 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 FALL 2018 ETHICS COMMITTEES VS. COURTS – Inside this issue . . . A ROLE FOR REGIONAL ETHICS Ethics Committee Vs. Courts - A Role for Regional Ethics Committees in COMMITTEES IN ADDRESSING Addressing Distributive Justice?...... 1 DISTRIBUTIVE JUSTICE?

Diff erences Between How US and UK Courts Resolve Cases Involving Life-Sustaining Treatment ...... 4

Harvard Revisits Criteria for Determining Death...... 6

MHECN Establishes Advisory Board …...... … 9

ASBH Off ers First Certifi cation Exam for Ethics Consultants ...... 10

Case Presentation...... 11

Calendar of Events ...... 14

Clinicians, hospital ethics committee for a particular patient. However, The Mid-Atlantic Ethics Committee members, and ethics consultants keeping stewardship and resource Newsletter is a publication of the generally embrace the aphorism: allocation out of the discussion Maryland Health Care Ethics “we must not ration at the bedside.” about decision-making sometimes Committee Network, an initiative of Justifi cations for withholding or violates logical reasoning, which the University of Maryland Francis King Carey School of Law’s Law & withdrawing interventions that can create confusion. For example, Health Care Program. The Newsletter prolong the life of a patient who the motivation to justify withdrawal combines educational articles with is not expected to survive hospital or withholding of life support as timely information about discharge are generally grounded fulfi lling a duty of nonmalefi cence activities. Each issue includes a feature in an autonomy-preserving or a (i.e., not harming a dying patient by article, a Calendar of upcoming benefi t-burden analysis rather than continuing “aggressive” life support events, and a case presentation and a resource allocation argument. One or attempting cardio-pulmonary commentary by local experts in reason for this is to avoid concerns resuscitation) is disingenuous if bioethics, law, medicine, nursing, or about confl ict of interest, that is, the patient does not have suffi cient related disciplines. that fi nancial gain to the institution cognitive capacity to experience or its staff infl uenced the medical harm (i.e., “to suff er”). Is this Diane E. Hoff mann, JD, MS - Editor decisions or recommendations made phenomenon unique to the United

© 2018 University of Maryland Francis King Carey School of Law States (US), where - outside the regarding access to health care The Mid-Atlantic Ethics Veterans Aff airs system—the services. Resource stewardship Committee Newsletter is published three times per year by health care system operates on and fair resource allocation are the Maryland Health Care Ethics principles of market competition integral components of the NHS, Committee Network rather than government planning? so endorsement of these ideals by Law & Health Care Program The case of Charlie Gard allows health care providers and those University of Maryland for comparison, as Charlie was they serve generally engenders Francis King Carey School of Law born in the (UK) broader public support. However, 500 West Baltimore Street and his health care was provided the issue of distributive justice was Baltimore, MD 21201 410-706-7191 through the UK’s National Health omitted from the court’s opinion. Service (NHS). Charlie’s case Still, some weighing in on social Diane E. Hoff mann, JD, MS, Editor Anita J. Tarzian, PhD, RN, gained international recognition media were critical of the clini- Co-Editor after referral to the Family Divi- cians’ and justices’ motivations Contributing Editors: sion of UK’s High Court, where in “depriving” Charlie of “hope Joseph A. Carrese, MD, MPH after numerous appeals, justices for a cure.” Interestingly, the US Professor of Medicine ultimately sided with doctors who researchers off ering to provide the Johns Hopkins University opined that Charlie’s condition (a experimental therapy to Charlie Brian H. Childs, PhD rare form of mitochondrial DNA were not subjected to the same Community Professor of Bioethics, depletion syndrome, or “MDS”) level of distrust, despite standing Mercer University School of Medicine, Savannah, GA was incompatible with life. They to gain fi nancially if Charlie had determined it was not in his best been allowed to receive the ex- Evan DeRenzo, PhD Ethics Consultant interest to receive further treat- perimental treatment they off ered. Center for Ethics ment and recommended that he be Hammond-Browning reported: Washington Hospital Center removed from life support while Edmund G. Howe, MD, JD receiving . Charlie’s …[I]t became apparent that two Professor of Psychiatry, U.S.U.H.S. parents wanted to take him to the potential imperatives drive access Department of Psychiatry US to try experimental treatment to treatment, the fi rst being the Laurie Lyckholm, MD with an oral drug thought to re- best interests and the other, the Asstistant Professor of Internal place what Charlie’s body couldn’t “experimental”/“fi nancial.” The Medicine and Professor of produce. Potential fi nancial con- willingness of the U.S. doctor to Bioethics and Humanities, Virginia Commonwealth fl ict of interest was not at issue provide this experimental therapy School of Medicine here because neither the hospital raises ethical questions of provid- Jack Schwartz, JD nor the staff stood to gain fi nan- ing a treatment purely based on Adjunct Faculty cially based on what happened to the availability of funding. At some University of Maryland Charlie. Also, money had been point Charlie’s parents were al- Francis King Carey School of Law raised through a GoFundMe cam- lowed to believe that if they could Henry Silverman, MD, MA paign to cover the costs of travel simply raise the money to travel Professor of Medicine and the experimental treatment, so to the United States then their son University of Maryland there would be no cost to the NHS would have hope, whereas the Comments to: (although the hospital was will- willingness to provide an untested [email protected] ing to implement the experimental therapy on the sole basis of rais- The information in this newsletter study protocol if they thought it ing the required money should is not intended to provide legal might have benefi tted Charlie). have raised warning fl ags and advice or opinion and should not be Presumably, the justices’ decision prompted further questions around acted upon without consulting an had nothing to do with the costs of anticipated outcomes. (Hammond- attorney. Charlie’s care. Browning, 2017, p. 467)

Here, the UK has an advantage Potential fi nancial confl icts such over the US in that individuals as these and distributive justice is- there are on more equal footing sues such as Charlie occupying an 2 Mid-Atlantic Ethics Committee Newsletter ICU bed that could benefi t another competency, and how their ser- all that it does is achieve a greater patient were not part of the debate. vices are evaluated and overseen. understanding by the parties of Yet, Close and colleagues (2018) each other’s positions. Few us- believe that best interest deci- Pope (2016) has studied “outlier” ers of the court system will be sions are inherently value-laden, cases and how they are handled in a greater state of turmoil and and there is danger in prioritiz- with regard to “futility” disputes. grief than parents in the position ing one set of values (e.g., that it He has long been an advocate of that these parents have been in is not in a child’s best interest to regional ethics committees as a and anything which helps them to be maintained on life support in compromise between the trans- understand the process and the the face of impending death) over parency/due process advantage viewpoint of the other side, even if others (e.g., that life is of value of courts and the effi ciency of they profoundly disagree with it, regardless of a child’s prognosis). hospital ethics committees in would in my judgment be of benefi t Instead of distancing such cases resolving disagreements between and I hope that some lessons can from discussion of fair distribu- family members and clinicians therefore be taken from this tragic tion of health care resources, they about when to withdraw non- case which it has been my duty to recommend that “[m]ore treat- benefi cial medical interventions. oversee. (Public Law Today, 2017) ment limitation decisions could He argues that such committees be based on rationing, and there would provide an advantage over Indeed, there is tension between would be less need to cloak ration- hospital ethics committees and the effi ciency provided by mem- ing decisions as best interests courts, as long as they were prop- bers of an institutional ethics com- ones.” They propose quasi-judicial erly composed (e.g., adequate mittee mediating confl icts in such multi-member tribunals (as is done representation from the com- cases and the neutrality, transpar- in other countries such as Aus- munity and marginalized groups) ency, and due process of a court. If tralia) as alternatives to courts in and thoughtful attention was paid the confl ict is primarily grounded resolving confl icts such as what to procedural standards, transpar- in stakeholder miscommunica- treatments Charlie’s parents could ency, and oversight. tion, it makes sense to attempt pursue for him. to address the miscommunica- Could a diff erent approach to tion before turning to the court. Huxtable (2018) sees promise in resolving the confl ict between But many cases that go to court UK’s Clinical Ethics Network Charlie’s parents and the medical (whether in the US or the UK) are (UKCEN) and regional clinical team have involved less stake- “outlier” cases, such as Charlie ethics committees, as they are holder burden while preserving a Gard or Jahi McMath. If the ques- quicker to issue their advice, less fair confl ict resolution process? tion at issue is whether a patient’s costly, more inclusive, and less ad- It’s reported that ethics consul- or surrogate’s demand for limited versarial. Such committees could tants met with Charlie’s parents, resources is reasonable, such as perhaps do a better job than the yet the case still went to court. access to advanced life support, a courts in acknowledging justice The court proceedings took sev- court is not best situated to address concerns while examining relevant eral months, and infl icted stress, this, and an institutional ethics facts and stakeholder perspectives. privacy violations, and cost bur- committee faces the challenge of Huxtable acknowledges, however, dens on the parties. Mr. Justice overcoming assertions of fi nancial that there is room for improve- Francis, the High Court judge bias. Regional ethics committees ment. Such committees should see overseeing Charlie’s court case, could present a preferable confl ict their role as not just supporting commented on the benefi ts of resolution process for such outlier clinicians but also the public. They attempting alternative means of cases. would need to be independent dispute resolution in these kinds from the health care institution(s) of cases. He stated: In the end, some of the same chal- where they work, and more trans- lenges facing institutional ethics parent about their operating proce- …[I]t is my clear view that me- committees would be present in dures, how members are selected diation should be attempted in regional ethics committees: deter and trained to ensure diversity and all cases such as this one even if Mid-Atlantic Ethics Committee Newsletter 3 mining who is competent to join, training and engaging members DIFFERENCES BETWEEN HOW US AND who are not compensated for UK COURTS RESOLVE CASES their services, attracting a diverse membership (particularly commu- INVOLVING LIFE SUSTAINING nity members, as well as medical TREATMENT specialists), and implementing fair and effi cient procedural standards and oversight. But perhaps such a committee could achieve “econo- mies of scale” by helping individ- ual institutions achieve, collective- ly, what is much more diffi cult to achieve individually: contribution toward a fair process for handling confl icts about medical treatment rooted in a community standard of medical care. This could be par- ticularly useful when stewardship of healthcare resources (such as an ICU bed or advanced life support technology) is at issue—even if that is not the central issue. In “Ethics Committees vs. Courts has been interpreted to mean that Anita J. Tarzian, PhD, RN – A Role for Regional Eth- they have protection from govern- MHECN Program Coordinator ics Committees in Addressing ment intrusion into their decision- Distributive Justice?,” Dr. Tar- making regarding health care for REFERENCES zian refers to the case of Charlie their children, absent a showing Hammond-Browning, N. (2017). When doctors and parents don’t agree: The Gard, the case that captured the of abuse or neglect or statutes story of Charlie Gard. Bioethical Inquiry, attention of the UK and many allowing a mature or emancipated 14, 461-468. in the US during the summer of minor to make certain decisions Huxtable, R. (2018). Clinic, courtroom 2017. The case was perplexing regarding their health. When or (specialist) committee: In the best for many American bioethicists parents disagree about a medical interests of the critically Ill child? J Med Ethics, 44, 471-475. and health lawyers likely because decision regarding their child, and Paris, J.J., Cummings, B.M. Moreland, of some basic diff erences in the the case goes to court in the US, M.P. & Batten, J.N. (2018). Approaches foundational law that undergirds the court will determine what is to parental demand for non-established similar cases in the US. For de- in the child’s best interest. This medical treatment: refl ections on the cision-making involving infants assessment generally includes the Charlie Gard case. J Med Ethics, 44, 443-447. and children, both courts in the benefi ts and burdens of life with Pope, T.M. (2016). Texas Advance Direc- US and UK apply a best interest and without the treatment at issue. tives Act: Nearly a model dispute resolu- test, as an infant or young child tion mechanism for intractable medical innately lacks decision-making In the UK, parents have no right futility confl icts. QUT Law Review, 16, capacity. However, UK and US to decide, but scholars have de- 22–53. Public Law Today (July 25, 2017). law diff er in who determines scribed the decision-making over “Judge who heard Charlie Gard case what is in the child’s best interest. life-sustaining treatment in these urges greater use of mediation.” Available In the US, the US Supreme Court cases as a ‘joint decision’ between at http://publiclawtoday.co.uk/health- has determined that parents have the child’s parents and his or her care/litigation/412-litigation-features- a constitutional right to privacy doctors (Close et al., 2018). When news/35410-judge-who-heard-charlie- gard-case-urges-greater-use-of-mediation. regarding family matters. This the child’s physicians and parents

4 Mid-Atlantic Ethics Committee Newsletter are unable to agree, the parents or member but is the “carer respon- when a patient or parent alleges the hospital can apply to the courts sible for [their] day-to-day care, that a health authority or institu- for a decision as to whether it is in or a professional such as a doc- tion has not allocated suffi cient the child’s best interests to provide tor, nurse or social worker where resources to a patient or family life-sustaining therapy (Id.). In this decisions about treatment, care member. However, even in these decision, the parents’ wishes are arrangements or accommodation cases, there must be an explicit “wholly irrelevant” to the objec- need to be made.” (Mental Capac- rationing decision made by the tive best interest test except to the ity Act 2005). health authority that the court is extent they play into the “quality asked to review. There is nothing and value to the child of the child- In both the UK and the US, the comparable in the US as there is parent relationship” (Mason & courts in these types of decisions no right to medical care, except a Laurie, 2013, p. 515). do not generally consider the cost limited right to emergency medical of continued life-sustaining treat- treatment under the federal Emer- Law between the jurisdictions ment or use of limited medical gency Medical Treatment and also diff ers in decision-making for resources for a patient. In the US, Labor Act. The closest analogy in adults who lack decision-making such decisions are thought not the US might be appeals of Medi- capacity. In the US, virtually all to be appropriate for the courts care or Medicaid coverage denial states have adopted law through as they do not have the requisite decisions in the context of health statute or that allows knowledge about how health care care or the appeal of a school sys- surrogate decision-making for an resources are being used, they tem decision under the Individuals adult patient who lacks decision- only have information about the with Disabilities Education Act making capacity. Surrogates can case before them. This type of (IDEA), denying a student a free make decisions based fi rst on what decision, most courts argue, is and appropriate education, in the they believe the patient would more appropriate for a legislative context of education. have wanted, i.e., the substituted body that can collect the informa- judgment test. If there is insuffi - tion necessary to make broader Upon reading about the Charlie cient evidence of what the patient resource allocation decisions. The Gard case last summer, individuals wanted, then the surrogate is to issue is a separation of powers familiar with the law regarding base his or her decision on what argument about the relative ex- medical decision-making in the is in the patient’s “best interest.” pertise and role of each branch of US might have asked, why did the Best interest in most states is government. Gard case go to court? In the US, defi ned by common law, although the parents could have simply in Maryland it is spelled out in As the UK does not have a consti- enrolled their child in a research the Health Care Decisions Act tution and has no formal separa- protocol without judicial approval. (HCDA). Interestingly, in the UK, tion of powers doctrine, the argu- But maybe not. British health law the courts have not adopted a sub- ment does not apply to the same experts explain that the case came stituted judgment test, rather under extent, but “courts usually refuse to court at the request of the health the Mental Capacity Act 2005, to intervene in resource allocation care institution. The court was at least in England and Wales, decisions, because they recognize asked to affi rm the medical deci- the courts apply a modifi ed best they are poorly situated to make sion that it was not in Charlie’s interests test that takes into ac- these prioritization decisions in best interest to be kept alive on the count some of the attributes of the the context of a single case” (Id.). ventilator but also whether it was patient that might have aff ected While UK courts do not generally appropriate for Charlie to undergo his or her decision, i.e., the pa- weigh in on the substantive issue experimental therapy. tient’s previous wishes, beliefs and of resource allocation, they will values. (This is actually similar to assess the decision-making pro- As to the ventilatory support and the defi nition of best interests in cess used by a health care institu- experimental therapy, Justice the HCDA.) Also, under the law tion to ensure that it is fair. Most Francis, who heard the case, deter- in the UK, the decision-maker is of the resource allocation ques- mined that there was virtually no not necessarily the patient’s family tions come to courts in the UK Mid-Atlantic Ethics Committee Newsletter 5 benefi t to either and that there was the potential for pain and suff ering by exposing Charlie to HARVARD REVISITS the experimental therapy. There- CRITERIA FOR DETERMINING DEATH fore, he determined that neither were in Charlie’s best interest and that the hospital would be acting within the law to remove Charlie from the ventilator. In the US, it is conceivable that if Charlie was being cared for in a hospital and the physicians were aware that his parents were enrolling him in an experimental protocol that involved more than minimal risk, they might have taken the case to court arguing that such action was medical abuse, but such an argu- ment would be much more dif- fi cult to make than whether or not the action was in the child’s best This year marks the 50-year anniversary of Harvard’s ad hoc commit- interest. tee report establishing neurologic criteria for death (what lead author Henry Beecher termed “irreversible coma”). The report, published Diane Hoff mann, JD, MS in 1968, informed the model defi nition of death that the President’s Jacob A. France Professor of Health Law Director, L&HCP Commission for the Study of Ethical Problems in Medicine and Bio- University of Maryland School of Law medical and Behavioral Research developed in 1981 to address the problem of variation in how states defi ned death. This led to adoption by all states (in some form) of the Uniform Determination of Death Act (UDDA), which defi nes death as occurring after “irreversible REFERENCES: cessation of circulatory or respiratory functions” or “irreversible ces- sation of all functions of the entire brain, including the brainstem” Close, E., Willmott, L., & White, (UDDA, 2008). B.P. (2018). Charlie Gard: In de- fence of the law. Journal of Medi- Last April, Harvard convened experts to revisit criteria for determin- cal Ethics, 44, 476-480. ing death. Recent cases such as that of Jahi McMath have raised vari- ous questions and concerns, as summarized below. Mental Capacity Act 2005, https:// www.scie.org.uk/mca/introduc- UDDA WORDING tion/mental-capacity-act-2005-at- a-glance. All functions of the entire brain. The UDDA specifi es that death oc- curs when “all functions of the entire brain” irreversibly stop. Since Great Ormond Street Hospital v. then, we have seen cases of people declared dead based on neurologic Gard, High Ct. of Justice, Fam- criteria whose bodies have been preserved with ventilator support and ily Division (April 11, 2017) and nutrition/hydration via gastrostomy tube. We now know that a body (July 24, 2017). can reach a kind of homeostasis after the brain ceases to function such that, with ventilatory support, the lungs, heart, kidneys, and liver can still function, and the gut can process tube-fed nutrients. Most neu- rologists and bioethicists have considered these bodily functions—ab- sent a functioning brain—as insuffi cient for human existence, since

6 Mid-Atlantic Ethics Committee Newsletter the brain is the integrating center may be reversible but since the de- refl exes and confi rming that no and without it, a human cannot cision was previously made not to spontaneous respirations have meaningfully exist in this world. try to restart it, its stopping is thus occurred over a period of time However, the fact that McMath permanent). The question of what (typically, ten minutes). Other reportedly began menstruating defi nes “permanent” circulatory ancillary tests may be done if after being declared brain dead has cessation can be further nuanced needed (e.g., an electroencepha- led others to conclude that part of in situations of organ donation logram or cerebral angiogram). her hypothalamus, which supports after cardiac death (when an “arbi- Some wonder whether other tests pituitary function, may have been trary” time is established after the should be considered or developed functioning. If this were scientifi - heart stops to declare death before that would reduce ambiguity or cally corroborated, then McMath organs are procured), and when uncertainty, such as giving intra- would not have met the UDDA patients are on cardiac bypass, venous atropine to see if heart rate criteria for death, which requires such as extracorporeal membrane increases, or more precise types of that “all functions of the entire oxygenation (ECMO). ECMO- blood fl ow studies. brain” have irreversibly ceased. CPR, implemented in some locales Some have advocated for chang- such as France, is highlighting the Variable practices. Many point out ing the wording in the UDDA to complexity of establishing a spe- that clinical practice varies from specify which functions of the cifi c time of death. Seema Shah, state to state and institution to brain must have permanently Associate Professor in the Divi- institution. Greer and colleagues stopped, and to clarify which sion of Bioethics at the University (2008) found major diff erences in diagnostic tests would confi rm of Washington School of Medi- brain death guidelines among the this. Lawyer and futility blogger cine, proposes that the UDDA’s leading neurologic hospitals in the Thaddeus Pope predicts that more defi nition of death be considered US, concluding that adherence to cases like these will challenge the as a “legal fi ction,” much like the AAN guidelines for determin- discrepancies between the UD- blindness (i.e., one doesn’t have to ing death by neurologic criteria DA’s standard and the American be completely blind to be consid- is inconsistent. Some wonder if Academy of (AAN) ered “legally blind”). having diff erent guidelines for criteria. adults and children may add to the CONFIRMING DEATH BY variable approaches. The AAN’s Irreversible cessation of circula- NEUROLOGIC CRITERIA guidelines for adults can be found tory function. Given advances at https://www.aan.com/Guide- in cardiopulmonary resuscita- Which tests are confi rmatory? lines/home/GuidelineDetail/431. tion (CPR) since Harvard’s 1968 The UDDA establishes neurologic The Pediatric Section of the Soci- report, it’s not surprising that criteria for death as requiring the ety of Critical Care Medicine’s (P- the UDDA may be outdated in following over a 24-hour period, SCCM’s) guidelines for children its language. Some have argued absent certain medications or and infants are available at https:// that the term “irreversible” be conditions that could confound the www.aap.org/en-us/Documents/ replaced with “permanent” when testing: socc_pediatric_bd_guideline_tool. referencing circulatory function, pdf. since some individuals who die by • No response to stimuli circulatory death could have their • No spontaneous movement Consent & refusal for apnea heart beat and circulation restarted or breathing testing. Some clinicians, such as but have opted for a “Do-Not- • No refl exes neurologist Alan Shewmon, have Attempt Resuscitation” (DNAR) concluded that apnea testing to order. In this case, circulatory However, the UDDA does not confi rm neurologic death is un- function is permanently ceased be- specify which tests must be done. ethical, as it may harm patients cause the DNAR order precludes It defers to “accepted medical who retain some brain function. attempts to restart the heart (that standards” for confi rming these Others believe that clinicians is, the stopping of the heart criteria are met. A neurologic should get consent to perform the exam involves checking for absent apnea test. There is a small but Mid-Atlantic Ethics Committee Newsletter 7 growing number of cases in which lenged the mainstream consensus surrogates have refused to allow that the UDDA’s defi nition of clinicians to perform an apnea test, death is “good enough.” Time will thus precluding the declaration of tell whether we stick with the sta- death via neurologic criteria (since tus quo and if not, what changes the apnea test is typically the are on the horizon. last step before death is declared via neurologic criteria). Nevada Anita J. Tarzian, PhD, RN recently passed a bill recognizing MHECN Program Coordinator that the determination of death is a clinical decision made by a doc- tor in accordance with AAN’s and REFERENCES P-SCCM’s guidelines, and that surrogate consent is not required. Greer, D.M., Varelas, P.N., Haque, However—Shewmon’s position S. & Wijdicks, E.F. (2007). Vari- notwithstanding—others have ability of brain death determina- suggested that physicians explain tion guidelines in leading US implications of the apnea test by neurologic institutions. Neurology, providing a kind of “informed 70(4), 284-9. non-dissent” with the surrogate such that objectors could decline. Uniform Law Commission In those cases, death would not be (2008). Uniform Determina- declared, but presumably, it would tion of Death Act, 12A uniform come eventually, for example, laws annotated 777. Available at: after a determination that further http://www.uniformlaws.org/Act. treatment was non-benefi cial, aspx?title=Determination%20 since the patient could not survive of%20Death%20Act. outside of the .

In 1968, Henry Beecher referred to brain death as “irreversible coma.” Indeed, some believe those with higher brain function loss, such as Terri Schiavo, could be considered dead. Robert Veatch suggested that individuals be able to declare in an advance directive whether they considered themselves dead based on permanent whole brain, higher brain, or circulatory function loss. This would allow for organs to be procured in a way that respects individual variation in when they consider a person dead. In 2018, Robert Truog, Director of the Harvard Center for Bioethics, referred to Jahi McMath as being in a state of “irreversible apneic unconsciousness,” which evokes Beecher’s reference. Truog chal- 8 Mid-Atlantic Ethics Committee Newsletter MHECN ESTABLISHES ADVISORY BOARD

On July 2, 2018, MHECN staff tion of the Maryland Orders attendees regarding their thoughts held a roundtable on the future of for Life Sustaining Procedures about the future of the Network. the Network to which they invited Act. They also heard from Anita An outgrowth of the roundtable twenty ethics committee represen- Tarzian, Coordinator of the Net- was the establishment of an tatives and thought leaders in the work, about what is happening Advisory Board for the Network areas of bioethics, health policy at the national level with ethics to keep it current and make and bioethics-related legal is- committees, in particular ef- sure that it is providing a useful sues. At the roundtable, attendees forts by the American Society of forum and services to its mem- explored the following questions: Bioethics in Healthcare (ASBH) ber institutions. Members of the 1) is the Network continuing to to establish standards for clini- Board include: Cynda Rushton provide members with valuable cal ethics consultation, and from (Johns Hopkins Hospital), Evan information and services; and 2) Paul Ballard of the Maryland DeRenzo (MedStar Washing- are there other types of initiatives Offi ce of the Attorney General, ton Hospital Center), David or services that the Network could about initiatives of the State Ad- Moller (Anne Arundel Medical provide that would assist members visory Council on Quality Care at Center), Frederick Weinstein, in addressing ethical issues that the End of Life. These presenta- Yoram Unguru (Sinai Hospital), arise in their institutions. Par- tions were followed by comments Jack Schwartz (formerly with ticipants heard presentations from from Cynda Rushton, Professor Maryland Offi ce of the Attorney Diane Hoff mann, who convened of Clinical Ethics, at the Berman General), Jessica Schram (Living the meeting, about the history of Institute of Bioethics and School Legacy Foundation), Lee Schwab the Network and activities and of Nursing at Johns Hopkins (Holy Cross Hospital), Wayne initiatives it has undertaken rang- University; David Moller, Direc- Brannock (Lorien Health Servic- ing from delivering educational tor of Health Care Ethics, Anne es), Marion Danis (NIH), Karen programs and providing informa- Arundel Medical Center; and Rothenberg (University of Mary- tion (e.g., The Mid-Atlantic Ethics Evan DeRenzo, Assistant Direc- land School of Law), Shahid Aziz Committee Newsletter to engaging tor, John J. Lynch, MD Center (formerly with Harbor Hospital), in research on such issues as the for Ethics, MedStar Washington Dan Kleiner (Kennedy Kreiger), competency of ethics committee Hospital Center. Each spoke Jackie Dinterman (Frederick members, the views of ICU physi- about some of the programs and Regional Health Systems), and cians and hospital legal counsel on issues their committee had taken Henry Silverman (University of the medically ineff ective treatment on or were struggling with. The Maryland Medical Center). The provisions in the Health Care De- remainder of the roundtable was fi rst meeting of the Advisory cisions Act; and the implementa spent hearing from each of the Board was on October 1, 2018.

Mid-Atlantic Ethics Committee Newsletter 9 ASBH OFFERS FIRST CERTIFICATION EXAM FOR ETHICS CONSULTANTS On June 10, 2018, the American Society for Bioethics and Humanities (ASBH) opened its application cycle for certifi cation to practice clinical healthcare ethics consulting. Those who demonstrate the requisite practice experience and pass the certifi cation exam will earn the HEC-C credential. The HEC-C program assesses core knowledge and skills in clinical healthcare ethics consulting. Eligible applicants are those who have a Bach- elor’s Degree (minimum) and at least 400 hours of healthcare ethics experience within the previous four years. The exam is administered during two, month-long test windows between November 1-30, 2018, and May 1-31, 2019. The application deadline date for the November testing window was September 10, and the application deadline date for the May testing window is March 10. The exam fee is $450 for ASBH members and $650 for non-members. To view the content outline for the exam with examples and to download an application, visit http://www.asbh.org. CORE REFERENCES FOR THE HCE-C EXAM

Applebaum, P. S. (2007). Clinical practice. Assessment of patients’ competence to consent to treatment. New England Journal of Medicine, 357(18), 1834-1840. Beauchamp, T., & Childress, J. (2012). Principles of Biomedical Ethics (7th ed.). Oxford, UK: Oxford Univer- sity Press. Berlinger, N., Jennings, B., & Wolf, S. (2013). The Hastings Center Guidelines for Decisions on Life-Sustain- ing Treatment and Care Near the End of Life. Oxford, UK: Oxford University Press. Core Competencies Task Force (2011). Core Competencies for Healthcare Ethics Consultation (2nd ed.). Chicago, IL: American Society of Bioethics and Humanities. Clinical Ethics Consultation Aff airs Committee. (2017). Addressing Patient-Centered Ethical Issues in Health Care: A Case-Based Study Guide. Chicago, IL: American Society of Bioethics and Humanities. Clinical Ethics Consultation Aff airs Committee. (2015). Improving Competencies in Clinical Ethics Consulta- tion: An Education Guide (2nd ed.) Chicago, IL: American Society of Bioethics and Humanities. Diekema, D., Mercurio, M., & Adam M (Eds). (2011). Clinical Ethics in Pediatrics: A Case-Based Textbook. Cambridge, UK: Cambridge University Press. Dubler, N., & Liebman, C. (2011). Bioethics Mediation: A Guide to Shaping Shared Solutions.Nashville, TN.: Vanderbilt University Press. Fletcher, J., Lombardo, P., & Spencer, E. (2005). Fletcher's Introduction to Clinical Ethics (3rd ed.). Hager- stown, MD: University Publishing Group. Ford, P. & Dudzinski, D. (Eds.). (2008). Complex Ethics Consultations: Cases That Haunt Us. Cambridge, UK: Cambridge University Press. Hester, D.N. & Schonfeld, T. (2012). Guidance for Healthcare Ethics Committees. Cambridge, UK: Cambridge University Press. Jonsen, A., Siegler, M., & Winslade, W. (2015). Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine (8th ed.). New York: McGraw Hill. Kon AA, Shepard, E. K., Sederstrom, N. O., Swoboda, S. M., Marshall, M. F., Birriel, B., & Rincon, F. (2016). Defi ning futile and potentially inappropriate interventions: A policy statement from the Society of Critical Care Medicine Ethics Committee. Critical Care Medicine, 44(9), 1769-1774. Lo, B. (2013). Resolving Ethical Dilemmas: A Guide for Clinicians (5th ed.). Philadelphia: Lippincott Williams & Wilkins.

10 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 confi dentiality. 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: When prognosis is poor. Mrs. C. has 4 family and medical team members Physicians Lose Their adult children and a very involved who witnessed the display are left son-in-law, but does not have an in various degrees of shock, confu- Tempers: Apologizing and Advance Directive of any kind. Her sion, and anger. Ethics is consulted Moving Forward in the family and the CICU team have in order to address the resulting Care of a Dying Patient been meeting regularly to discuss tensions and distress. her circumstances and determine The following case and fi rst appropriate goals of care. These CHART NOTE AND commentary are reprinted with discussions have gone on for more RECOMMENDATIONS permission from the Journal of than a week. The CICU attending Hospital Ethics, 2015, Volume 4, physician has explained at 1. Dr. W. and the clinical ethicist Issue 1, 33-34. each meeting that the patient’s should meet with the family so that neurological condition has not Dr. W. can off er an apology Mrs. C. is a 76-year-old woman changed, that she is hemodynami- for his frustration. brought to the hospital’s Emer- cally stable, and so it will be up to 2. Dr. W. should make a clear rec- gency Department (ED) after the children whether or not they ommendation about what he thinks a sudden, unwitnessed cardiac want the patient to receive a trache- would be best for Mrs. C. and why arrest. EMS was called after ostomy and percutaneous endo- he thinks this would be the best ap- she was found by her neighbors scopic gastrostomy (trach and peg) proach to her future care. and they were unclear as to how and be moved to a nursing home, long she had been down. Mrs. or whether they want to shift to REASONING C. received extensive cardio- comfort measures only. pulmonary resuscitation lasting The attending physician has dem- over 40 minutes in the ED before As the patient’s care moves into onstrated an impulsive lack of establishing a stable cardiac the second week, Dr. W., the CICU appropriate professional demeanor rhythm suffi cient for transfer to attending physician who has been and regard for the sensitive nature the cardiac intensive care unit present at several of the previ- of the matters under discussion. (CICU). ous family meetings, has grown His voiced frustration has resulted increasingly frustrated as a result in additional distress to the family After her admission to the CICU, of the children’s inability to de- and the rest of the clinical team. the neurology team assessed the cide what direction they want to After calming down and refl ecting, patient, concluding that she had take with their mother. It has been Dr. W. tells the ethics consultant he suff ered signifi cant and likely Dr. W.’s training that he is to lay regrets having blown up. He tells irreversible neurological dam- out the options and let the family the consultant that his frustration age caused by her cardiac arrest. decide. But he has grown frustrated comes not only from the family’s Both neurology and the CICU with their indecision and walks indecision, but from the way in teams have determined that the out of the next meeting throwing which he feels he has been trained patient has very little chance his hands in the air, declaring, “I and professionally conditioned to at any meaningful neurologic don’t care what they want, as long refrain in such circumstances from recovery and that her general as they make a decision!” Both off ering his own recommendation; Mid-Atlantic Ethics Committee Newsletter 11 that he’s just to lay out the options appears to be rightly coming to COMMENTS FROM AN and let the family choose (Hutchin- the decision-making from a posi- ETHICS CONSULTANT son & Veatch, 2015). tion impartial towards the outcome. That does not mean, however, Some form of communication Frustration is no excuse when an that a physician ought not give a breakdown is present in most ethics emotional reaction gets the better recommendation. Although this is case consultations. This case was of a clinician’s behavior. When this a controversial point, we take the prompted by an unfortunate inci- happens, however, clinicians need position that after presenting all dent in which the CICU attending to acknowledge that they’ve lost medical options within reason, it physician failed to navigate the pa- their temper and be sure to genu- remains the physician’s responsi- tient’s care in a way that conveyed inely apologize. We’ve learned that bility to make a recommendation. compassion and a clear direction a sincerely felt and given apology Often this can help a family come to stakeholders. Ethics consultants from a physician for a medical er- to their own decision, whether in are likely familiar with scenarios ror goes a long way to reduce the agreement with the physician or in which the medical team reports distress physician mistakes cause to not. If, under these conditions, the having repeatedly attempted to patients and families (Robbennolt, family cannot come to a decision, achieve consensus with family 2009). it is incumbent on the physician to members on appropriate goals of move to sustain the patient’s life care for an incapacitated patient but There is no reason to think that and ready the patient for discharge. have been unsuccessful in achiev- an honest apology for losing If the physician and other clinicians ing such consensus. Sometimes, one’s temper can’t have the same can do this in a supportive rather best eff orts were implemented to benefi cial eff ects. One particular than frustrated manner, whatever no avail. Often, however, the qual- potential outcome, the building the decision, the hospital experi- ity of the communication preceding of trust, is particularly important ence is likely to be less distressing the request for ethics consultation here. Combining renewed trust and for everyone. has been defi cient. In this case, having the physician give a clear Dr. W.’s outburst is indicative of recommendation may help move The Editorial Group of the Center a clear breach in communication the family forward. Separating Dr. for Ethics, MedStar Washington standards. How should the re- W.’s frustrated outburst from the Hospital Center, Washington, DC sponding ethics consultant (or con- content of his remarks indicates sultants – the plural “consultant” is that he has come to these meet- REFERENCES used here for simplicity) respond to ings with an appropriate impartial- this breach of professional ethics? ity towards the outcome. When a Bosslet, G.T., Pope, T.M., Ruben- patient is unstable and imminently feld, G.D., et al. (2015). An offi cial The obvious step of gathering dying, physicians should only off er ATS/AACN/ACCP/ESICM/SCCM relevant facts in this case may be indicated interventions. If patients policy statement: Responding to additionally challenged by the or families ask for interventions requests for potentially inappropri- breakdown in trust (and perhaps that are not indicated on the ba- ate treatments in Intensive Care medical team rapport) that resulted sis of well-established standards Units. Am J Respir Crit Care Med, from Dr. W.’s inappropriate behav- of practice, ordinarily physicians 191(11), 1318-133. ior. Wicks and Buck (2013) point should not provide such interven- Hutchinson, P.J. & Veatch, R.M. out the importance of health care tions (Bosslet, et al., 2015). (2015). Do physicians have a re- leaders modeling best practices for sponsibility to provide recommen- cultivating resilience, which they Where confl icts continue, transfer dations regarding goals of care to refer to as more than “bouncing should be facilitated to the great- surrogates of dying patients in the back from stress” (p. 6) but “both est degree medically feasible. But ICU? Point/Counterpoint. Chest, recovering and deepening as a con- where a hospitalized patient, even 147(6), 1453-1459. sequence of encountering stress in a dying hospitalized patient, can be Robbennolt, J.K. (2009). Apolo- the right way with adequate inner made stable to discharge, Dr. W. gies and medical error. Clin Orthop Relat Res. 467(2), 376-382. 12 Mid-Atlantic Ethics Committee Newsletter strength” (p. 7). They identify While ethics consultants can do “becoming easily upset” as one red their best to avoid taking sides in fl ag of possible burnout. Thus, one their eff orts to reconstruct rele- role for the ethics consultant may vant perspectives, they should not be to speak privately with Dr. W. to be put in a position of enabling or understand what prompted his frus- apologizing for another provider’s tration and if he has insight into his unprofessional conduct. inability to regulate his emotional reaction in front of family and Anita J. Tarzian, PhD, RN staff . If this is a recurring pattern MHECN Program Coordinator with this particular provider, other interventions may be appropriate as a method of follow-up. REFERENCES Shapiro and colleagues (2014) created the Center for Professional- Shapiro, J., Whittemore, A., & ism and Peer Support at Brigham Tsen, L.C. (2014). Instituting a and Women’s Hospital in Boston to culture of professionalism: the educate staff about professionalism establishment of a center for and to manage unprofessional be- professionalism and peer support. havior. They report that mandatory The Joint Commission Journal on education sessions on professional Quality & Patient Safety, 20(4), development successfully engaged 168-77. clinicians in developing a culture of “enhanced professionalism.” In Wicks, R.J. & Buck, T.C. (2013). particular, they have developed a Riding the dragon: Enhancing process for responding to clinicians resilient leadership and sensible exhibiting repetitive unprofessional self-care in the healthcare execu- behavior that demonstrates suc- tive. Frontiers in Health Services cessful outcomes in altering such Management, 30(2), 3-13. behavior.

Whether Dr. W.’s outburst was an isolated incident or a pattern of unprofessional conduct, he should be steered in the right direction to correct his missteps. In this case, it would be appropriate for the ethics consultant to coach Dr. W. in how to make amends and redirect atten- tion toward doing what’s right for the patient. If Dr. W. would not be open to such an intervention, that says something about the organiza- tional culture.

It’s not uncommon for patients or family members to vent frustrations about members of the health care team to ethics consultants. Mid-Atlantic Ethics Committee Newsletter 13 CALENDAR OF EVENTS Fall 2018

OCTOBER 8-10 Aspen Ethical Leadership Program for Healthcare. Visit: http://www.aspenethicalleadership.com. 11 A Live Online Workshop on Disclosure and Apology after Medical Errors and Adverse Events. Visit: http://ipepweb.org/disclosure-and-apology. 16 The 3rd Annual Ethics Symposium: Conscientious Objection, sponsored by the Clinical Ethics Department at Children's Hospitals and Clinics of Minnesota, Minneapolis, MN. Visit: www.childrensmn.org/conferences. 16-17 Pediatric ELNEC (End-of-Life Nursing Education Consortium), sponsored by the University of Maryland Children’s Hospital, 110 S. Paca St., Baltimore, MD. Contact: [email protected]; 410-328- 6257. 17-18 ELNEC (End-of-Life Nursing Education Consortium) for Veterans, sponsored by Stella Maris, 2300 Dulaney Valley Rd, Timonium, MD. Visit: https://www.stellamaris.org/news/events. 18-21 The Future is Now: 20th Annual Meeting of the American Society for Bioethics and Humanities, Anaheim, CA. Visit: http://www.asbh.org.

NOVEMBER 2-5 The 14th Biannual Clinical Ethics Immersion, Center for Ethics at MedStar Washington Hospital Center, Washington, DC. Visit: https://www.medstarwashington.org/our-hospital/center-for-ethics/clinical-ethics. 8 5th Annual Interprofessional, Interfaith Ethics Forum: Exploring Mental Health from a Trauma-Informed Care Lens, SMC Campus Center, University of Maryland, Baltimore, MD (Co-sponsored by MHECN – DISCOUNT for MHECN members).

14 Mid-Atlantic Ethics Committee Newsletter RECURRING EVENTS

Johns Hopkins Berman Institute of Bioethics Seminar Series, either at Feinstone Hall, E2030, Bloomberg School of Public Health (615 N. Wolfe St.) or JH Technology Ventures (1812 Ashland Ave), Baltimore, MD. 12N-1:15PM. Visit: http://www.bioethicsinstitute.org/educationtraining-2/seminar- series.

October 8: “Bioethics, Pain Medicine, and America’s Opioid Crisis,” Travis Rieder, PhD, Director of the Master of Bioethics degree program and Research Scholar, Berman Institute of Bioethics (JH Technology Ventures)

October 29: “Opportunity Pluralism and Children’s Health,” Matteo Bonotti, Lecturer, Department of Politics and International Relations, Monash University (Feinstone)

November 12: “Marked Men: In Case You Don’t Know About Tuskegee,” Peter Buxton (Feinstone)

November 26: “Moral Distress: A Time for Hope?” Alisa Carse, PhD, Associate Professor of Philosophy, Kennedy Institute of Ethics (Feinstone)

December 10: “Incidental Enhancements: The Challenge of Prevention for Human Gene Editing Governance,” Eric Juengst, PhD, Director, Center for Bioethics, University of North Carolina (Feinstone)

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 refl ection 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 to 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 affi liate members who provide additional fi nancial support.

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

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